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Disability, stigma and suffering in schools. Emerging narratives for the right to inclusive education.
Eduardo S. Vila-Merino (1*); Teresa Rascón-Gómez (1); Ignacio Calderón-Almendros (1).

(1) University of Malaga, Spain. (*) Corresponding author. E-mail: eduardo@uma.es.
Date received: 29/01/2023. Date accepted: 21/07/2023. Published online: 02/01/2024.

How to reference this article: Vila-Merino, E. S., Rascón-Gómez, T., & Calderón-Almendros, I. (2024). Disability, stigma, and suffering in schools. Emerging narratives for the right to inclusive education. [Disability, stigma and suffering in schools. Emerging narratives for the right to inclusive education]. Education XX1, 27(1), 353-371. https://doi.org/10.5944/educxx1.36753

Summary. Starting from the Social Model of Disability, this article aims to make visible the processes of stigmatization, discrimination, and suffering that occur in schools, as well as to review the socialization and education processes experienced in the school institution by students, families, professionals, and activists. At the same time, it addresses the absence of educational responses to diversity and the social and professional demands that it requires from an inclusive perspective. To this end, we present six in-depth life stories and thirteen autobiographical accounts from students, families, professionals, and activists developed through narrative research, analyzing their social and educational experiences based on three categories: the labeling process and its repercussions, the response of students, their families, and professionals, and the repercussions of discrimination on the individual and their environment. The results show their struggles to find support that allows them to undertake activism and empowerment processes aimed at achieving a school that does not segregate students identified by disability in specific centers or classrooms, and that takes them into account for pedagogical decision-making. By way of conclusion, the need to place the voices of students and families at the epicenter of the inclusion discourse is shown; to recognize them as activists capable of demonstrating, through their narrated experiences, the need to challenge the labeling process; and to lead research committed to educational and social change, which enables new life maps and drives a social movement for the right to education.

Keywords: inclusive education, special education, right to education, educational discrimination, disability discrimination, access to education.

Abstractt. Based on the Social Model of Disability, this article seeks to highlight the processes of stigmatisation, discrimination and suffering that take place in schools, while also examining the processes of socialisation and education that students, families, professionals and activists encounter within the school setting. Furthermore, it addresses the absence of educational responses to diversity and the social and professional demands required from an inclusive perspective. To this end, narrative research is used to analyse the social and educational experiences of six individuals’ life histories and thirteen life stories of students, families, professionals, and activists, categorised into three groups: the labelling process and its consequences; the response of students, families and professionals; and the effects of discrimination on the person and his or her environment. The results show the challenges they face in finding the support necessary to engage in activism and empowerment processes with the goal of creating an inclusive educational environment that does not segregate students with disabilities in special education settings, but rather takes them into account in all pedagogical decision-making processes. The paper shows the need to place the voice of students and families at the very heart of the inclusive discourse; to recognise them as activists with the capacity to show, from their narrated experiences, the need to challenge the labelling process; and to play a leading role in research committed to educational and social change, thereby enabling new life maps while promoting a social movement for the right to education.

Keywords: inclusive education, special education, right to education, educational discrimination, disability discrimination, access to education.

Introduction

This article starts from the Social Model of Disability, which emphasizes the need to denaturalize oppressive theories that dehumanize others (Abberley, 1987). This de facto denial of the humanity of people labeled with disability confines their lives and those of their families, who often normalize inequalities under the guise of structural functionalism and the biologistic interpretations attached to it, and which continue to be so reflected in the school environment. Therefore, we consider, following the line already proposed by Barton (1998), that the attention from research to disability with a focus on inclusion processes remains insufficient, that is, without decoupling it from other oppression processes that intersect in schools.

Multiple studies on the effects of lockdown have highlighted the importance of presence in the challenge of reducing inequalities (Bonal & González, 2021; Calderón & Rascón, 2022). But even when presence is achieved, the right to education depends on the possibility not only of being with others, but of being one of them. Furthermore, family participation and involvement must be considered another fundamental factor for the development of the right to education, so barriers to it are also obstacles to the exercise of this right. Therefore, it is necessary to recognize the right of all people to learn, participate, and progress, involving their immediate context. This implies understanding that we learn thanks to others, different from me, and that differences are actually what define us, not homogeneity. And on this, scientific evidence is also conclusive: it is not only beneficial for students who have been diagnosed and labeled as different, but the rest benefit equally (Hehir et al., 2016; Justice, Logan, Lin & Kaderavek, 2014).

However, today the right to inclusive education is being violated in Spain despite the ratification of the Convention on the Rights of Persons with Disabilities in 2008 (Calderón, 2018; Calderón, Moreno & Vila, 2022; Echeita Sarrionandia, 2017; Echeita Sarrionandia et al., 2009; CERMI, 2010; UN, 2017; UNESCO, 2020; among others). These are serious and systematic violations: “A structural pattern of discriminatory educational exclusion and segregation, based on disability, has been perpetuated through the medical model” (UN, 2017, p. 16). This pattern is often based on the psycho-pedagogical report and the labeling it entails, making the individual assume the stigmatizing categorization, incorporating personal and family guilt for the situation of segregation.

This situation clashes with international research, which shows the inappropriateness of segregated pedagogy for special needs (Ainscow, Dyson & Weiner, 2013; Hehir et al., 2016), whose approach focuses on the characteristics of learners from a norm-centric perspective, something contrary to the construction of an inclusive school. In contrast, the Social Model of Disability emphasizes the humanity of persons with disabilities, denied by this perspective, which deepens their separation from others, including in schools. Therefore, we believe that studies on disability must necessarily be integrated into more general sociological and pedagogical theories and practices, rooted in philosophies and pedagogies of differences (Skliar, 2007).

Part of the unresolved problem of inclusive education may be related to the fact that research often focuses on the teacher’s perspective on inclusion. That is, research may not be sufficiently inclusive if it excludes the voices and perspectives of other groups within the educational community, and if it does not commit to transforming reality, as Parrilla (2009) suggests. For example, the study by Echeita Sarrionandia et al. (2009), which draws from professionals in associative networks; López and Carmona (2018) and Calderón and Habegger (2012) were based on families and their views on socio-educational inclusion; the studies by Moriña (2010), Calderón et al. (2021), and Messiou et al. (2022) delve into students’ perspectives. In line with the approach taken in this research, we understand inclusion as a social process of citizen co-responsibility, and families and students are fundamental actors in evaluating the educational and social system, precisely because of the value of their experiences, which are sometimes very painful, for social and educational improvement.
 

Method

This study develops a narrative research aimed at understanding and comprehending experience (Clandinin & Connelly, 2000) through the generation and analysis of life stories and accounts. It is a work that is part of a research project that seeks, among other objectives, to locate and document narratives about disability and inclusive education, some of which stem from people involved in the recognition of human rights, in order to disseminate them and recognize their value. On the other hand, it aims to review the socialization and education processes experienced in the school institution by students, families, professionals, and activists. The study was developed in Spain between 2018 and 2022, and is based on two hypotheses:

1. The activism of people with disabilities and their environment contributes to the formation of identities that promote inclusive education and social change.
2. The narratives and knowledge that emanate from the Social Model of Disability allow us to question and improve the current school model.

In an attempt to challenge the power relations that dominate research practices, biographical research allows for the generation of new narratives that we have divided into three main blocks:

1. Narratives through participationfor the transformation of collective ideologies. They have constituted the framework for all the work, built collectively in two major events through the dialogue of three hundred and two hundred people respectively.1 Based on these major shared discussions, both the demands for the construction of biographical narratives and the proposals for action, including political advocacy, have been generated.

2. Narratives through biographical research: gathering stories of exclusion and struggle for inclusive education. Six in-depth life stories and thirteen autobiographical accounts from students with disabilities, families, professionals, and activists committed to inclusive education from different parts of Spain have been developed. This article revolves around these narratives.

3. Action-oriented narratives. These have allowed for the development of proposals that crystallize into new ways of confronting reality through participation and the production of tutorials, guides, and materials for building inclusion. In other words, the research does not remain at the level of describing reality but encourages its transformation through the action of the participants themselves.

Biographical-narrative research, according to Atkinson and Coffey (2003), is a dialogical methodology where narratives reflect lived stories, and information is constructed between protagonists and researchers within a specific social context. This makes narrative analysis a highly valuable tool for thinking beyond data, providing “a critical way of examining not only key actors and events but also social and cultural conventions and norms” (Atkinson & Coffey, 2003, p. 97).

The inclusion of plural narratives makes it possible to connect the present, the past, and the future of the stories lived by the protagonists (White & Epston, 1993). In this sense, narrative as a research technique aims for the person creating it to narrate themselves personally before others based on their experience and developing a narrative identity (in the way Ricoeur proposed and which is developed in Moreno & Vila, 2022) from the everyday.

We have followed the proposals of Bolívar (2014) and Pujadas (2002) when referring to the life story (life story) as the autobiographical narrative created by the subject themselves, and life history (life history) as one in which the researcher enriches the account with other sources, interpreting, triangulating, and contextualizing.

The research process followed consists of different phases:

1. First phase: A call is made through social networks for the submission of accounts that meet a series of minimum requirements, which are listed below:

• Share a personal school experience, whether as a student, family member, or professional.
• Participate in training and research activities (interviews, reviews, discussion groups, etc.).
• Experiences of activism for inclusive education are valued.
• It is noted that experiences with the greatest narrative potential will be selected, allowing diverse realities and profiles to be made visible.

The requirement itself was already a form of negotiation, which would later be processed and adapted for each participant. Finally, a total of twenty life stories were collected from students with disabilities, families, professionals, and activists committed to inclusive education.

In parallel, at the first major participatory event, a group of people—due to their outstanding activist careers—were invited to construct, together with the research team, their in-depth life stories, which involved different processes of biographical interviews, documentary collection, text creation, interviews with other stakeholders, etc.

2. Second phase: The stories are selected and distributed among the research team members for formal review. After a careful reading, a total of thirteen stories were selected, taking into account the variety of profiles (seven mothers of boys and girls labeled with disabilities, three students, a counselor, and two activist women), as well as the narrative value of the text in terms of depth and descriptive and analytical capacity. These texts were revised to try to improve them by establishing collaboration with the person who had written them, so that they could delve deeper into certain elements of interest, and make any modifications or additions they deemed necessary, until they felt fully identified with their narratives. At the same time, the six in-depth life stories were being constructed and negotiated with their protagonists. These stories featured three mothers, two students, and an educational counselor.

3. Third phase: Following the feedback process, the narratives were corrected and reworked, and a negotiation process was initiated for the finalized life stories, as well as for the use and treatment of the narratives for scientific and academic purposes.

4. Fourth phase: Definitive delivery of the life stories to the research group in order to initiate the analysis process by identifying emerging categories.

5. Fifth phase: Preparation of the ‘historified’ narrative report based on the convergences and arguments of the texts within the developed categories. This interpretive report has been constructed through an emergent categorization process of the different narratives created, for which we have used the qualitative data analysis software NVivo 11, considering the three broad categories that organize the analysis of this article, and which encompass more than a hundred themes. These categories have been negotiated with the protagonists of the life stories, and in processes corresponding to ‘Narratives through participation’ and ‘Action-oriented narratives’.

The research has had great scope, both in breadth and depth and transfer. The narratives of participation have served as a pretext, like a “river of communities of meaning” (Cortina, 2021, p. 177), which allows for the interpretation of these accounts and life stories. For their part, the action-oriented narratives constitute a hopeful projection that responds to the oppressions evidenced by the protagonists through biographical research, which according to Bertaux (1981) is very suitable.

Results

The main results of the analysis of the accounts will be presented based on the aforementioned fundamental categories, after a systematic categorization process from which the narrative report has been generated and the evidence has been extracted.

The labeling process and its repercussions

From birth, we are subjected to social scrutiny. Even then, families have to deal with affirmations and value judgments, especially when their members deviate from heteronormative canons. These judgments gradually turn into labels used to categorize people based on their differences, affecting the social expectations projected onto them.

In this context, diagnosis is considered a very valuable tool by doctors, families, and the individuals involved, as it provides information upon entering an often unknown territory. In the educational arena, diagnosis offers certainty in the face of uncertainty, providing a solution to the fear of the unknown: How should I proceed now? What should I expect? What position will this new situation put me in? These and other questions place the entire context in a position to respond to new challenges. Ignorance then implies a possibility for informal inquiry and the reconstruction of ideologies about human nature, differences, social relationships, etc. In this context, diagnosis is often received by families with a phase of grief. This grief implies the death of uncertainty and, with it, the freedom of the individual. A process of acceptance or resistance then begins, not to the person—as is often stated in psychopedagogical analyses—but to the social mandate that families must assume (Calderón & Ruiz, 2015). Accepting whether they can or cannot decide, achieve, try, fail, solve, create… That is the dispute that unfolds in those initial moments. It is therefore fundamental that disability be understood as a social construct (Abberley, 1987; Barton, 1998), not as a solely biological reality to be accepted uncritically or not. And the diagnostic process as an exercise of power that imposes an entire narrative that frames a life (Calderón, Moreno & Vila, 2022).

My son Alejandro was born in November 2007, and already in his first life assessment, he ‘failed’. From that moment on, we knew this would socially mark him, but we didn’t know the path that awaited us… (Life story of Isabel, mother).

And in that process, shame and guilt emerge, because it implies the acceptance of normality as the organizer of reality. The social imperative, propped up by the medical model, turns the social into the biological, thus preventing the questioning of normality.

That impacted me a lot, seeing the whole story of that girl who had been in school for ten years, and at four they had put ‘mental retardation’ in her report, and the teachers’ expectations for her were zero. In fact, the teacher told me: ‘The girl (…) can’t, because she’s slow.’ That was the phrase: ‘She’s slow.’ That impacted me a lot (Life story of María José, counselor).

Processes similar to the one described previously are experienced by the rest of the contexts, which respond to the insecurity of uncertainty, with attitudes that do not question the criterion of categorization but rather assume it. Thus, the categorization as a person with a disability becomes a distinction from the correct norm, which remains unquestioned. In this context, discriminatory attitudes are nothing more than the correct adherence to the social norm towards the incorrect person who has been expelled from normality. These attitudes, sometimes unconscious, intensely affect the processes of identity construction. Prejudices, indifference, rejection, or condescension affect the image that boys and girls labeled by disability forge of themselves, conditioning their relationships with others and vice versa.

I went into the store and I wanted to see how much some boxes cost (…). We went to the checkout (…) to ask and pay, and they didn’t want to charge us (…). I was there: ‘I’m talking to you’ and nothing, they didn’t pay me any mind. I was there and it was as if I wasn’t there. They ignored me and I had fire inside (Life story of Corina, graduated student).

Most of the accounts agree that the beginning of schooling is one of the hardest and most exhausting moments. A stage full of new emotions, experiences, and learning that should be lived with happiness, but which ends up being a true ordeal for the participants. Their schooling becomes an oppressive and discriminatory process lived with deep pain and a great feeling of loneliness.

In Primary school, some girls noticed the way I spoke and asked me if I was mentally retarded. And I didn’t know what to answer, I didn’t know what that word meant, nor was I aware that the way I spoke was different. I felt uncomfortable and confused, unable to react (Life story of La Yonka, student).

Ignorance also leads to a lack of empathy and humanity. That is, at the same time that a person’s humanity is stolen by objectifying them, humanity is lost. In this sense, the stories emphasize how labeling processes, understood as processes of oppression, condition the very identity construction of individuals and their families, enveloping them in a halo of stigmatization and tragedy that makes them vulnerable to adopting positions of social and institutional submission, as in the school context. Continuous pressure leads them to adapt to the social mold imposed by the label (Calderón & Ruiz, 2015), although this is not done passively; resistance is generated. People always have agency.

Until one day I said: ‘Enough is enough.’ I didn’t say it, but I thought it. I stayed still, looking at the sheet, angry, very angry. They told me: ‘Come on, Indira, cut paper, man… Indira, come on!’ And I kept my arms crossed, looking at my paper and thinking: ‘No! I’m not going to keep cutting and pasting papers! Because I don’t want to, I don’t like it! Okay? I want to learn, with the others, I have the right to learn.’ (Life story of Indira, student).

Response from students, families, professionals, and activists: from resignation to resistance

The expectations we project onto other people mediate how we see them and how they see themselves. These expectations are built from previous experiences and others linked to parenthood, on the one hand, from normative and culturally assumed mandates about the role of people with disabilities and their families, and from their limits of action. Added to this are prejudices or difficulties in emotional management that affect families. Some explain how ignorance leads them to helplessness and knowledge to frustration.

A schooling report came out of that meeting, and when they called me to sign it, when I read it, there were things I disagreed with and I said so, and they told me: ‘If you don’t sign it, your son won’t have a report and won’t be attended to. For your son to be attended to, you must sign.’I agree. And although I didn’t agree with everything that was said there, I signed thinking it was best for my son (Life story of Isabel, mother).

These are everyday situations of discrimination, where diagnostic categories are used to legitimize exclusion in the social and school spheres. This even involves a double emotional and social blackmail, presenting the labeling as the only way to access certain resources and support, without explicitly acknowledging the violation of the right to education this entails. There is a discriminatory regulatory framework, which underpins opaque practices, as has been confirmed by international organizations (UN, 2017).

But the wider family nucleus also influences and conditions the response of mothers and fathers, either as a burden or as a catalyst, against the backdrop of prejudice, usually.

For many people, we were a shame, a disgrace. My father’s family sank into sorrow, they didn’t know how to treat us, whereas my mother’s family welcomed us as two more girls (Life story of Mentxu Arrieta, activist).

As a result of the above, it is worth noting the crossroads at which families find themselves: they need answers to the different situations their sons and daughters experience, and on the other hand, they encounter social rejection in almost all areas, especially the educational one, where they are supposed to find sensible answers to their diverse needs. As a consequence of this, many end up adopting an attitude of resignation (at least initially), letting the days go by because they don’t know what steps to take to seek possible solutions to their problems or simply complying with opaque bureaucracy.

Since they told us it was the best option and they didn’t offer us any other possibilities, nor did they explain anything about curricular adaptations, only that Lucía needed them, I signed everything like a fool: curricular adaptations and [escolarización en] the ASD classroom. (…) Lucía spends all day in the ASD classroom. What they had said about her only being there for a short time and leaving when she needed to was a lie (Life story of Belén, mother).

Many professionals also find themselves at that crossroads where they must decide whether to act according to what the school system demands of them or what they consider to be truly inclusive education.

Stopping doing what you were doing requires a “Passage through Hellof your own inertia and of not satisfying the expectations of others, not satisfying their desires, which you know leads to the idea that you will then cease to be a good professional for the other (Life story of Raúl, counselor).

Resignation to social mandate is a conformist attitude towards what they say the person is, and it invites inaction, to go with the flow. In contrast, acceptance of who the person truly is has to do with the need to have goals, to dedicate oneself to building them, and to transform reality to adapt it to our needs and those of others. This conception of acceptance is inherent to the idea of resistance, as it seeks the formation of power niches within the dominant social structure in order to alter it. It is a response to adversity that is intrinsically related to the capacity to fight for the rights of children and their families where they are not recognized or fulfilled, and to the need to transform realities into spaces of empowerment, awareness, and the search for solutions.

This has meant a new fight with the school and turning the other parents against me, but I don’t care, David has the right to receive the education he is entitled to. Let them call me crazy if they want. Yes, I am Joanna, the crazy one (Life story of Johana, mother).

Once disability is understood as a social construct, the shift to resistance makes the educational administration uncomfortable and hinders the corporatism of many school institutions that, at times, forget that school is an educational community made up of families, students, and education professionals, and that the latter cannot act without considering the needs of the former. We constantly find discriminatory attitudes and abuses of power in the narratives that strip the person and their environment of value, rights, and dignity. For this reason, it is common for the most activist families to be labeled as crazy and hysterical in the school context.

They always said I couldn’t, that I wasn’t capable. It has been my biggest burden all this time and their assessment has been incorrect. Furthermore, they even told my mother that she was hysterical, crazy, for trying to exercise my rights as a person, as a student, as a human being. They told her to give up, that there was nothing to be done. But both she and I have continued our fight (Life story of Quim, student).

All these issues lead back to shame or guilt. This is another dimension linked to the social consequences and the pressure that people and their families suffer. In some cases, the need for social acceptance leads to changing routines and has consequences for self-esteem.

Meanwhile, I did my best to fit in, but nothing worked. I changed my clothes and started wearing makeup, but it didn’t work. Every time I came into contact with a new group of people, I was sure I wouldn’t fit in, and unfortunately, my prognosis was confirmed (…). I tried to talk as little as possible, I hated it when a teacher asked me something in class, even wishing I wouldn’t speak (Life story of La Yonka, student).

Shame is a feeling that arises from the fear of social disapproval. It is an emotion that emerges from social comparison and whose outcome always works against us, making us feel inferior and insecure, and affecting our self-esteem. Shame is a mechanism for adapting to our environment, which begins from circumstances that affect us particularly and diverge from the conventional, from that apparent normality that is hidden behind a social construct based on a relationship of oppression. In families identified by disability, the inability to adapt to an unequal reality, shame, fear of differences, and lack of empathy become aspects that disrupt relationships.

Last school year he told me: Mom, here I am a ghost. I come and go without anyone or anything noticing. And that’s how it is (Life story of Isabel, mother).

Unfortunately, Daniel got worse (…). You can’t imagine the frustration as a mother seeing one son so ill and another little one crying and depressed because he didn’t have his mom, and all this alone because his father, who is a good person, was never able to face Daniel’s situation and ended up hiding (Life story of María Jesús, mother).

In this regard, it is striking how the assumption of responsibilities by paternal and maternal figures is unbalanced, leading to situations where it is the mother who, overcoming that shame, is able to take the lead and fight. As we will see later, an intersection between gender and disability, which makes evident the importance and lessons learned from previous struggles, as well as the role of women in caregiving —another form of oppression, leading to job loss— and the uncritical acceptance of patriarchy by many fathers.

Repercussions of discrimination on the individual and their environment

Discrimination not only causes harmful effects on the individual but also affects their entire environment. Many families report the pain suffered from situations of injustice they have experienced during their children’s schooling due to the inability of some education professionals to adapt the teaching-learning process to the needs of their sons and daughters.

The day before the exam, Indira was worried and wanted to know if she could use her pens and if there would be a grid. I don’t fall easily, especially not in front of Indira. But tears welled up in my eyes. And she hugged me and said: ‘we are a team, and we are going to reach the summit.’ Literally. Always teaching lessons (Life story of Noemí, mother).

These families suffer significant physical, emotional, and economic strain. Many report being forced to make great efforts to cover the educational supports required for the cognitive, social, and emotional development of their sons and daughters, which the administration does not provide.

In any case, caregiving is a significant challenge for families of people with disabilities. However, there seems to be evidence that women feel obligated to assume greater responsibility for these tasks as part of their gender role. This is a role that is rarely made visible, yet it causes great physical and emotional strain for the primary caregiver.

As always, the responsibility for making adjustments and teaching Indira has fallen on me. This is something that has remained unchanged in all subjects (Life story of Noemí, mother).

Many of these mothers have had to put their careers on hold or abandon them permanently to care for their sons and daughters. They set aside their personal and professional aspirations to dedicate themselves fully to the care and support of these minors and to promote their inclusion. These women and their families perform tasks that should be the responsibility of educational centers and the administration, but which are often not carried out due to a lack of will, resources, or training on the part of the educational agents themselves, a situation exacerbated by the pandemic.

They made me go to my daughter’s class and accompany her because her teacher had to go to the doctor and would be absent. Likewise, I remember another occasion when my daughter’s class went on a field trip to a farm school, and I had to follow the bus in my own car, wait an hour after they had finished their lunch, and go in to give her insulin (Life story of Esmeralda, mother).

Caregiving mothers are a resource that many educational centers manage as they please. When it comes to reducing the center’s responsibilities, family participation is welcomed. However, when their actions aim to provoke transformations that affect the organization, functioning, and school culture, they are considered an intrusion. It’s as if anything that could alter the school’s routine is seen as an affront. That’s why the families of many children with disabilities report being labeled as crazy, problematic, or difficult…

In my case, I left my job (I’m a psychologist and had a permanent position). It was the decision my husband and I made; we believed it was best to meet David’s needs. For the schools, I’m the crazy mother, the problematic one, the troublemaker… Because I defend my son’s right to education (Life story of Johana, mother).

Despite the obstacles and difficulties that caregiver women face in meeting responsibilities that should be assumed by the school system and shared by the rest of the family unit, we find in many of these mothers a significant activist and resilient attitude. Their desire to enforce the rights, needs, and interests of their sons and daughters drives them to continue fighting against the adversities they encounter. Something that, moreover, is difficult to do individually, which is why they are generating collective responses:

This guide aims to highlight the value of dissent and the need for dissent within schools. Those of us who participated in its development have experience in dissenting within its walls. We are a group made up of families and professionals, and our dissent has arisen from the violation of the rights of our relatives or our students within the education system. We intend for this text to serve as a guide for dissent among the three sectors that make up the school: teaching staff, families, and students (Guide ‘How to Dissent’, in press).

This dissent arises from the desire for justice, and also from the protection of the happiness of sons and daughters. Contrary to what happens in many school institutions, they have no problem modifying their routines, their relationships, and their own environment to achieve a goal: to offer them an inclusive education that provides them with learning and happiness.

Three moves, three, to be close to my son’s new school. A center where they listen to families, do not label, and do everything possible for the well-being of the students. A center where family participation is its fundamental pillar. Where inclusion is real (Life story of Belén, mother).

Discrimination generates physical, social, and psychological consequences that affect and exclude, causing a situation of great vulnerability that can seriously impact a person’s self-concept and self-esteem. Feeling undervalued compared to their peers triggers feelings of weariness and boredom, and in some cases even depression, as indicated in some accounts.

What the voices of individuals and their families tell us is that systemic suffering exists and can be avoided or, at the very least, mitigated with empathy, solidarity, and a will to change, but also because human rights and international legislation oblige us to do so.

Discussion of results

Social justice should always be at the epicenter of educational theories and practices. Inclusive education is education from and for social justice. The individuals studied and their families, when demanding inclusion, highlight the lack of justice in social and educational procedures from the moment their daughters and sons are born, and in their subsequent incorporation and presence in the education system. The different accounts of individuals always emphasize how the labeling process and the segregation process go hand in hand and reinforce each other. This aligns perfectly with what other research suggests (Bonal & González, 2021; Calderón & Habegger, 2012; Calderón et al., 2021; Echeita Sarrionandia, 2017; to name a few), but in this case, the narratives bring meaning and depth to these processes by being based on the experiences of individuals and families who have lived and are living them in their daily lives and who fight against the injustices that stem from them. In this regard, the ideas of Calderón and Ruiz (2015) make sense when they state that people need to find trusted references, and then social blackmail loses its power, and individuals and contexts can be liberated thanks to these supports. The testimonies collected advocate for this and seem of great value to us, insisting on how disability allows us to rethink ourselves, our relationships, and our policies (Saur & Sidorkin, 2018).

From there, the role of activism in this issue must also be valued, as in all those related to the violation of basic rights, which is where the processes of resistance and change regarding discriminatory practices are generated. Families move from resignation to resistance when they manage to empower themselves, when they become aware (become conscious, as Freire would say) and decide to confront the situations their children experience. On the other hand, the system delegates responsibilities to them, as well as basic care during school hours, but is reluctant to take them into account for pedagogical decision-making about their children. This causes feelings of helplessness and displacement in crucial aspects for the development of students, and even leads to talk of institutional mistreatment, mainly visible in curricular and relational issues, as has been observed in the results.

In turn, converging with the results obtained by López and Carmona (2018), we can understand that the measure to be implemented most urgently is the awareness and training of the entire educational community and society in general, highlighting the need to develop solutions that improve current inclusive processes. We cannot allow the school lives of persons with disabilities to be seen as dispensable and for families to be made to feel that the only option left to them is to accept the narrative of the tragedy that has befallen them.

To this must be added a recurring demand in the narratives, which is the need to implement support for students within the classrooms and not in specific classrooms. This is presented here as essential for the real exercise of the right to education from the perspective of families, but it also aligns with what research indicates (Ainscow, Dyson & Weiner, 2013; Hehir et al., 2016; Stainback & Stainback, 2007; for example) and the benefits this brings to the entire group, not only in terms of their education in values, but also in how the presence of another professional in the classroom facilitates the use of other strategies and methods for all students. This would also allow pedagogy to move closer to its role in creating educational spaces for resistance, focused on developing students’ attention, the pleasure of learning, and practicing solidarity and the construction of the common good (Meirieu, 2022).

The study presented here has involved some ethical and logistical difficulties. Partly because it works with people’s desires, starting from their suffering. This generated dilemmas, concerns, and immense work that, at times, has been emotionally demanding and difficult to face. The participating individuals have taken ownership of the research, gradually turning it into an example of citizen science and a social movement yet to be fully realized. The collaborative networks generated within the research framework have served to create new shared narratives in large forums for national and international political construction; vital and social cartographies that fuel indignation at the violation of the right to education and generate transformation; and freely accessible resources that have been made available to citizens to make schools more inclusive (2).

With this work, we vindicate their concerns and desires, placing the voices of students and families at the epicenter of the discourse on inclusion, making visible their suffering, processes, and struggles, as well as recognizing their research work and their role as knowledge producers; and as activists capable of showing us, from their narrated experiences, the need to challenge the labeling process and demonstrate that another education and another society are necessary.

Acknowledgments

This article is part of the research project “Emerging Narratives on Inclusive Schooling from the Social Model of Disability. Resistance, Resilience, and Social Change,” funded by the Ministry of Science, Innovation and Universities (RTI2018-099218-A-I00).

The authors would like to thank each participant in the research for their committed and selfless collaboration.

Notes

1. They can be consulted in https://bit.ly/3z6opfl and in https://bit.ly/41jfC4t.
2. An overview of this research projection can be seen in https://creemoseducacioninclusiva.com/.

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