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Weaving Together Struggles for the Right to Education: Collective and Personal Narratives for Inclusion from the Social Model of Disability. | Weaving Struggles for the Right to Education: Collective and Personal Narratives for Inclusion from the Social Model of Disability.

Ignacio Calderón Almendros and María Teresa Rascón Gómez (University of Málaga).
Contact with the authors: Ignacio Calderón Almendros. Faculty of Education Sciences. University of Málaga. Campus de Teatinos s/n. 29071-Málaga, (Spain). E-mail: ica@uma.es.

Date received: 31. V. 2022. Date revised: 29. VI. 2022. Date accepted: 01. VII. 2022.

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ABSTRACTThis paper aims to question and contribute to the transformation of educational cultures, policies, and practices that lead to exclusion by devaluing differences. To this end, it draws on a series of narratives and collective constructions that address human diversity and the right to inclusive education, allowing us to move beyond the boundaries of normality and create new vital and social cartographies driven by desire. The methodology used, which combines participatory action research with biographical and narrative research, as well as the scope of the project, allows us to understand the complex, everyday constructions and collaboration mechanisms implemented by teachers, students, and activist families seeking the recognition of functional diversity in schools. The stories intertwine and build upon each other, promoting knowledge and actions imbued with harsh experiences, often rendered invisible by the institution; these actions are charged with the emotion of promoting social movements and educational changes. Furthermore, the results obtained show that the formation of mutual support and resistance networks fosters resilience processes, points to structural transformations, and benefits all individuals in schools. 

KEYWORDS: disability; disability discrimination; inclusive education; human rights; human diversity

ABSTRACT: This paper aims to question and contribute to the transformation of those cultures, policies, and educational practices that lead schools to exclude some students by devaluing differences. With this intention, we have collated a series of stories and collective narratives that address human diversity and the right to inclusive education. They allow us to escape the new frontiers of normality, creating vital and social cartographies motivated by a desire for change. The methodology used combines participatory action-research processes with biographical and narrative research. The scope of the project, combined with these processes, allows us to understand the daily and complex constructions as well as the collaborative mechanisms put into practice by teachers, students, and activist families who seek recognition of all kinds of abilities in schools. The stories are intertwined and build upon each other, promoting knowledge and actions that draw upon difficult experiences, usually made invisible by the institution. These actions are full of emotion to promote social movements and educational changes. Likewise, the results obtained show that the formation of networks of mutual support and resistance favors resilience processes, pointing towards structural transformations and acting for the benefit of all people in schools.

KEYWORDS: disability; disability discrimination; inclusive education; human rights; human diversity.

SUMMARY: This article aims to question and contribute to the transformation of educational cultures, policies, and practices that lead to exclusion by devaluing differences. To this end, it recovers a series of collective accounts and constructions that address human diversity and the right to inclusive education, as well as allowing us to go beyond the boundaries of normality, creating new vital and social cartographies driven by desire. The methodology used combines participatory action research processes with biographical and narrative research, with the aim of broadening the project’s scope to understand daily and complex constructions, as well as the mechanisms of collaboration put into practice by teachers, students, and activists, and families seeking recognition of functional diversity in schools. The stories intertwine and are constructed, promoting knowledge and actions laden with harsh experiences, generally invisible to the institution; such actions are imbued with the emotion of promoting social movements and educational transformations. Thus, the results obtained show that the formation of mutual support and resistance networks favors resilience processes, points to structural transformations, and benefits all people in schools.

KEYWORDSdisability; discrimination against persons with disabilities; inclusive education; human rights; human diversity.

Introduction

Throughout history, we have witnessed continuous social struggles for human rights and social justice to ensure the inclusion of all people, especially those belonging to the most vulnerable sectors. One of the most excluded social groups is that of people identified by disability. The activism of this group has achieved great advances in the field of human rights, and has exerted a fundamental influence on the modification of the collective imagination, broadening and enriching the social conceptions that existed around (dis)ability, but also what remained outside of it. Despite this, the dehumanized view of people with disabilities still persists (Calderón & Ruiz, 2015; Calderón, 2018; Soldevilaet al., 2022). Their rights are still violated today, making them victims of new forms of prejudice and discrimination. 

The activism of people with disabilities has developed new discourses in recent decades in defense of respect for the dignity of human life, proclaiming the need to promote inclusion and acceptance of differences (Palacios, 2008). There is still work to be done to advance struggles that address a situation of evident social and educational harassment, allowing for the construction of new life projects. But, community life; we cannot fall back into the error of focusing on the individual. This is precisely what the project of making schools inclusive proposes: to lift the problem out of the individual well, because that approach condemns differences. 

Narratives, (dis)ability, and resistance

What we aim to show is precisely the back-and-forth path between the personal and the structural, which permeates relationships. And this new project must be based on alternative and counter-hegemonic ways of narrating and understanding life (personal and collective, school and social), which allow the humanity that bureaucratic and socialising processes mutilate to re-emerge. These resistances, structured collectively, which withstand the blows of stigma and the ideology of domination, end up distilling resilient experiences: people who manage to overcome the adverse conditions of their experience without mortgaging their questioned humanity, thanks to a profound search for the meaning of life (Cyrulnik, 2003; Frankl, 1991; Ungar, 2003; Rutter, 1993). Cyrulnik, a neurologist, psychiatrist, and ethologist, highlights the importance of contextual transformations in generating resilience, and the way he addresses the topic constitutes a new foundation: by speaking of “abandoning the tomb” or “the world of the dead,” for example, he is building an entire narrative based on people’s everyday constructions. Thus, some personal stories begin to have scientific support, such as that of Rafael, the brother of one of the authors of this article, when he was about to be segregated into a special education center:

In truth, it was the teachers against me. […][P] but what is the coffin […] of the dead, I open it and I am here. […] One hurts me. Okay, I’m hurt, I have blood all over my body, but the Lord pushed me. He says: “You can. I give you the gift that is music, fighting with school.” Okay, with the coffin that I was – well, it was in my mind, it’s not real – I open the coffin and here I am. (Rafael, in Calderón & Calderón, 2016:110. Own translation)

What does it mean for a person identified with Down syndrome to reframe the positioning of a teaching team behind a schooling report as putting them in a coffin? And what does this mean after Cyrulnik used this metaphor to build his theory? What does it add to all of that when Rafael published his words in a top-tier scientific journal? This work is situated within this vast set of questions, generating a universe of revolutionary and revealing analysis. 

In 1968, in her poem “The speed of darkness,” Rukeyser wrote: “The universe is made of stories, not of atoms” (Kaufman & Herzog, 2005:467). More recently, it was Galeano who would coin this idea: 

The world is not made of atoms. The world is made of stories […], because it is stories – the stories one tells, the stories one hears, one recreates, one multiplies… […] – that allow us to turn the past into the present, and that also allow us to turn the distant into the near. What is far away into something close, and possible and visible. (Galeano, 2017. Video transcription) 

This premise has not been understood this way by the social sciences. But precisely, proposals for transformation are constituted as stories, which in the best of cases end up making history. It is in stories – also in those we dream and fictionalize – that we build an impossible and distant world into a possible and real one, and in which our lives, with their desires, possibilities, limits, and longings, intersect and blend. 

From cultural psychology, Brunner (1991) adopted this idea that we are narratives. We can create and recreate the stories of our personal and collective lives, and redesign our wounded identities. Therefore, the recovery of resistant and resilient narratives allows us to break free from the boundaries of normality, questioning the unquestioned, creating new vital and social maps guided by desire. This then generates a whole field of action: unconditional support for the fight against inequality (whatever the reason), in the scientific interpretation of the legitimate voices of people named or not by disability, in the human (not therapeutic) accompaniment of teachers to their students, and in making public the stories of resistance and resilience that manage to question and move boundaries. They are resistant because they are collective struggles against the oppressive conditions that subject them, and because they question them as they can subvert power; and they are resilient because they necessarily harbor reconciliation within them. 

From educational research, we can take a new stance towards reality and educational relationships, fraught with uncertainty, capable of violating some of the foundations upon which we have been building pedagogical knowledge, educational relationships, and the very meaning of institutions like schools. The research stance must flee from that false independence that makes us feel safe. 

If disability research is about researching oppression, and I would argue that it is, then researchers should not profess ‘mythical independence’ from disabled people, but rather should join them in their struggles to confront and overcome that oppression. (Barnes, 1996:110. Own translation) 

Theories of resistance can be especially useful in this endeavor, questioning and transforming those educational practices used to marginalize and devalue differences. As Giroux (2019) points out, “power is not exclusively domination. It is also resistance.” Power as resistance is that which goes against the natural order of things, that which breaks with the bureaucratic and technocratic vision of politics and the teaching profession, which postpones “the present to join the voracious and fallacious discourses of the future” (Skliar, 2018:22). Therefore, part of resistance must dispute the limits of dominant discourse, for which we need to recognize the wisdom of ordinary people (Apple, 2013). 

Research can contribute to empowering the knowledge and languages of oppressed people, humanizing the social and educational relationships that develop inside and outside of school. Educational centers should be able to use this form of research to establish themselves as spaces for the struggle for social justice, questioning the normative knowledge that dominates the curriculum and educational relationships, and making visible the presence of other knowledge, equally valuable and significant, that arises from the life experiences of excluded people. 

Resistance theories help to dismantle the forms of domination of the social and school system. They allow for the analysis of the cultural production of subordinate groups, showing their potential and limitations, and enabling the development of critical thoughts and learning derived from collective practices (Giroux, 1983). 

1. Justification and objectives

Although inclusive education has been on the international political agenda since the Salamanca Statement (UNESCO, 1994) and has occupied a significant part of public discourse, the truth is that it remains an unfulfilled desire in our education system. It constitutes Sustainable Development Goal No. 4 of the United Nations, it is a recognized human right (UN, 2006), and it is part of the LOMLOE and LODE. However, there is a constant violation of the rights of many children in our schools when they are categorized, segregated, ignored, or abandoned as ineducable (Calderón, 2018). 

Starting from these premises, we understand that educational research can build knowledge and resistance with ordinary people to provoke the desired change, abandoning the logic of scientific management to embrace educational change as a social movement (Rincón, 2019). Researching alongside activists is particularly valuable, as “regardless of the radicality of their public manifestations, they would all march under the banner of ‘Nothing about us, without us'” (Lafuente, 2013). This is about common science, about producing knowledge together, which is not the same as producing knowledge for everyone (Lafuente & Estaella, 2015): the common world does not demand more experts, nor mayors. When people generate valuable, tested, and useful knowledge, and do so together, they build a desirable, more just, and hospitable world. 

The present research starts from the idea that the activism of people with disabilities and their support network contributes to the formation of identities that promote inclusive education and social change. Likewise, mutual support and resistance networks foster resilience processes that benefit everyone. The research objectives can be summarized in two:

1. The interest in locating and documenting narratives about disability and inclusive education that originate from this collective, with the aim of disseminating them and recognizing their educational and social value in promoting equity and resistance to inequality. 
2. The need to understand the collaboration mechanisms implemented by teachers and families seeking the recognition of functional diversity in schools, in order to enhance them and promote transformative proposals. 

 2. Methodology 

The development of this study is based on an “ad hoc” methodology, which combines several Participatory Action Research (PAR) processes, capable of telling unpleasant truths (Kemmis, 2006), with biographical and narrative methodology. Participatory action-oriented methodologies facilitate the construction and development of common projects to transform reality, critically examining power and privilege according to Brydon-Miller & Maguire (2009), generating collaborative relationships as a framework for more effective practices. On the other hand, biographical and narrative methodology allows for understanding personal experiences under conditions of oppression and exclusion (Bertaux, 1981). We are particularly interested in Booth’s (1998) perspective on the “excluded voice thesis,” as it allows us to access the perspectives and experiences of oppressed groups. Biographical research recognizes and values the other, to the point of questioning and even breaking the power relations that dominate research practices. This issue of the silence of the subaltern is analyzed by Spivak (2006), who reflects on the difficulty of the subaltern subject to express themselves and be heard. A difficulty that lies in the absence of spaces that accommodate these voices that have historically been silenced. Participatory methodologies also enable new forms of discursive production, unexplored channels through which to channel new discourses and the generation of processes of listening, transformation of practices, and questioning of power.

The research project has sought to recover these other subaltern voices by generating new narratives, which we have divided into three blocks:

a) Narratives through participation for the transformation of collective ideologies, which have been collectively constructed in two major events through the dialogue of a large group of people. In them, two participatory diagnoses were developed that would involve the analysis and projection of two cycles of Participatory Action Research (PAR). The first, held at the University of Malaga on February 24, 2018, took the format of a Workshop titled “New perspectives in school guidance, for children and against segregation,” with 10 hours of intensive participatory work. More than 100 people participated in the meeting in person, and more than 200 through streaming. All of them belonged to different groups of professionals (teachers, guidance counselors, health system professionals, educational administration technicians, managers, lawyers…), families, and students from different parts of Spain. Information about the meeting can be consulted at https://bit.ly/3z6opfl. 

The second event took place virtually during the lockdown caused by the COVID-19 pandemic, over 5 weeks between May and June 2020. It consisted of a series of “Conversations about (inclusive) school” in a virtual format (publicly available at https://bit.ly/3wX.TIHV) and shared on social media. More than 200 people from different nationalities participated in these conversations, which is why the meetings were operationally divided by groups: families, students, professionals, management teams, researchers, and political representatives on the Education Commission of the Congress of Deputies. This action, in addition to the analysis for the new cycle of PAR, aimed to generate public debate in the context of the parliamentary process of the LOMLOE, from which the collective work “Analysis and proposals for a new educational law” (Calderón & Rascón, 2020) emerged.

b) Narratives through biographical research: stories of exclusion and struggle for inclusive education.Six in-depth life stories and 20 brief accounts from students with disabilities, families, and professionals committed to inclusive education from different parts of Spain have been developed. In turn, four focus groups have been conducted to explore the impact of the lockdown on school inequalities, and stories have been cross-referenced. With the desire to unravel the scope of narrative research to generate resonance with other stories in the international context, we developed dialogue sessions based on Calderón’s book (2014) with 11 mothers and one father of people with Down syndrome in Colombia.

c) Narratives of creation, oriented towards action.They constitute a step forward in the construction of proposals that can channel new ways of facing the explored reality. That is, to create new paths through different forms of participation, which lead to an expansion of the participants’ experience, and to the production of prototypes, guides, materials, and useful artifacts for building inclusion. We will highlight four works:

The first refers to a participatory action research project developed at CEIP “La Parra” in Almáchar (Málaga), an experience that is serving to train other centers and from which a guide to promote coexistence in school emerges. More information can be found at https://bit.ly/3Ng6p6R. 

The second is a Working Group on Inclusive Psychopedagogical Assessment, with more than 2 years of recorded periodic meetings, made up of about 50 guidance counselors from all over the country who are developing a new proposal for alternative psychopedagogical assessment, as a key piece in the construction of the inclusive school. 

The third is a Working Group of Secondary School Students for Inclusion. For more than 1 year, periodic meetings have been recorded with students from all over the country. Together they have built a guide for students themselves to promote inclusion in their institutes (Calderónet al., 2021). 

The fourth and final component is the creation, promotion, and dissemination of the awareness campaign for inclusive education, “Quererla es crearla” (Wanting it is creating it). The campaign, designed, developed, and disseminated by a working group of activist families for inclusive education, consists of several videos, most notably the one that gives the campaign its name (available at https://youtu. be/ze1K3X5-NTY) and a website (https://creemoseducacioninclusiva.com). This work culminates in a documentary titled “Inclusive Education. Wanting it is creating it,” directed by filmmaker Cecilia Barriga, which will premiere in October 2022. 

This brief overview of the project demonstrates the complex architecture developed between 2018 and 2022, remaining highly sensitive to the emerging needs and proposals generated by the people involved. This means that the research has served them, not the other way around, incorporating information from over 500 individuals across its different sections. All of them have participated as research subjects, not as research objects (Freire, 1982), for which we have developed methods that allow resistance to the current oppressive conditions of their experiences. This is a social pedagogy that aims for the transformation of reality with a “determined activist spirit: to unite people and societies around initiatives and values that […] enable their participation in building a more inclusive, plural, and critical citizenry” (Caride, 2003: 48). 

The Participatory Action Research developed incorporates very diverse methodological proposals within it, all of them community-based, which drive processes of personal and social transformation. The analysis and categorization processes have also been constructed by the participants, and have resulted in different reports, publications, and actions. Each of these areas has its own research processes, which are being published in detail. All of this, therefore, advances the construction of resilient communities to generate resilient identities (Calderón & Ruiz, 2015). 

This article aims to show some general findings, weaving connections between different pillars of the research, with the intention of demonstrating the relevance of constructing new narratives, collective imaginaries, and possibilities for action in which ordinary and silenced people learn to recognize the value of their voices, to weave them together, and to thereby rebuild their lives, integrating them into popular education movements based on hope. 

3. Results  

“We are the story we tell ourselves and that others tell us, an unfinished story that cannot be concluded.” (Mélich, 2001:407) 

That story could well begin with Rafael’s story and the conversation his mother had with the neighbor upon returning from the hospital after giving birth: 

Antonia came with a very bad attitude, not much grace. She says: “Hey, they say your child is a mongoloid. Is he or isn’t he?”. I say: “Well, if you say so and people say so, then he must be”. She says: “But really, is he or isn’t he a mongoloid?”. I say: “To me he isn’t, to me he’s my child, but now I don’t know what people say or what you say… Well, it’s fine, what else can I tell you?”. (Basilisa, Rafael’s mother) 

“If you say so, it must be”. Those words have at their core an idea: that reality is not fixed, but that we create it. And although we often realize that we cannot shape the world to our liking, what we do and say transforms the world. Keeping this idea in mind places us in the role of “makers” of that desirable world, rather than victims of a dehumanized world. In that brief conversation, two neighbors bring into dialogue two discursive practices that construct reality, two paradigmatic models – the medical model, which locates the problem in biology, and the social model, which locates it in relationships and culture. It would be difficult to know what influence those words had on Rafael’s emergence from the world of the dead a few years later. Words spoken when he had just been born. 

Something related to this happened to Antón. His mother was one of the pioneers of the Workshop, and she did so through a video (available at https://youtu.be/VgQAPrD0WlU)) in which she recounted an anecdote with her son’s preschool teacher who, in her effort to be the teacher of everyone, tried to ensure that Antón was always accompanied by other classmates when he had to use the elevator due to his mobility. She turned it into a privilege rather than an obligation. 

One day, they got into a tangle: normally 4 classmates went with him, and that day 5 appeared at the elevator door. She told them: ‘Only 4 of you can go and there are 5 of you. I’ll leave you there for a while to deliberate. […] And the group’s spokesperson told her: ‘We’ve already discussed it and decided that the one who can’t go in the elevator is Antón because he goes every day.’ (Carmen, Antón’s mother) 

Carmen then wondered what had happened for those children who didn’t see a disability to, seven years later, ‘not feel that it’s part of their world.’ Antón has spent the last years of his schooling in absolute solitude, to the point of having finished compulsory secondary education remotely. 

However, Antón shared his experience at the meetings of the ‘Students for Inclusion’ group. He also made it public on social media. He challenged political representatives in the Education and Vocational Training Commission of the Congress: ‘What measures will you take so that no child feels alone in school?’ (Calderón & Rascón, 2020:19-20). Later, he worked with a team to create the guide ‘How to Make Your School Inclusive,’ which addresses loneliness as a form of violence that must be abolished in schools. He presented it, along with his friends, to the Minister of Education (Calderónet al.…, 2021). A teenager mistreated by the school giving lessons to the head of the education system… He gave lectures for teachers and radio interviews. In one of his latest public interventions, after having shared his experience of loneliness at high school with students from the Faculty of Education of the University of Malaga, a student asked him if he wanted to share any positive experience at school. Antón recalled the story of the elevator. His mother’s memory had become part of his own memory. And this intertwined memory, along with the collective construction of other narratives, constitutes a new way of confronting the colossal “mechanisms of silencing” that exist in schools, and the silenced voices that are now heard are an affirmation of struggle (hooks, 1989). 

We were becoming aware as a group with each story and each experience that was shared. At the same time, the idea that our biological condition is not the problem, but the ‘excuse’ for maintaining a system that feeds on segregation, was taking shape. (Estela, Víctor’s mother) 

A few months after the Workshop where Carmen told the story of the elevator and many other people shared their own stories of pain and joy, Basilisa, Rafael’s mother, passed away. One of the floral wreaths said: “If you say so, it will be.” It was sent by a group of mothers and fathers she never met. 

A school is many schools. A single person is the whole world 

A few years before the meeting between Rafael’s mother and her neighbor, Ángel was born. Ángel is the son of María Luisa, who began her story (available at https://youtu.be/GMP3p_LQDB4) as: 

My son was born in the eighties and his educational experience in mainstream school was limited to early childhood. I won’t talk about the pain it caused me to accept that the school wasn’t adapting to my son’s needs. (María Luisa, Ángel’s mother) 

It might seem like something from the past, but it’s actually very current. Many children are segregated in special schools and specific classrooms today. It’s seen as logical, normal. Few people find it strange to practice that is often justified as being in the child’s best interest, to offer them the resources they need. Alejandro, Rubén’s father, describes the segregated schooling he has experienced for years in the terms of Rafael and Cyrulnik: “it’s condemning them to an educational and social death” (Diario Público, 9/27/2020). 

At just 10 years old, Marcos brought this invisible reality to the forefront. In a few minutes of emotional and innocent conversation, he described the reality of classrooms with overwhelming logic and simplicity (available at https://youtu.be/sW_D7T_aV5A): 

Marcos: [Mi escuela] For me it’s good, but for my sister not so much, […] because she feels alone in the playground. […] She’s alone. […] Always.
Ignacio: And how could that be fixed, Marcos? What do you think of?
Marcos: By talking to the kids in her class. […]
Ignacio: And what could we say to those in her class? 
Marcos: That they should get together with her. 
Ignacio: And why do you think they don’t get together with her? 
Marcos: Because he has autism. 
Ignacio: And you used to say, Marcos, that it was good for you. Why is school good for you? 
Marcos: Because they send me things, I’m with my friends, they hang out with me… (Marcos, Primary student) 

Marcos shows that in the same school, homogeneity generates radically unequal experiences. The difference between his experience and his sister’s defines what makes him considered just another student in the school: being with his friends (presence), they gather around him (participation), and they give him assignments (his learning matters). A 10-year-old boy illustrates inequity in school and, in his everyday language, constructs the definition of inclusion used by UNESCO (2017). Mainstream schooling is, as Slee & Allan (2001) argue, a form of cultural genocide that denies the legitimacy of differences. According to Ainscow (2003), inclusive education is technically simple but socially complex. However, for Marcos, it is easily solvable: it’s fixed with dialogue. 

Marcos suffers as he recounts the loneliness and abandonment his sister experiences. So does María Luisa, even decades after experiencing that pain with her son Ángel. And yet, she becomes a role model for other mothers, without resigning herself to defending the right to education that was denied to her son. She repeats one slogan like a mantra: “A single person is the whole world” (María Luisa, Ángel’s mother). Lucía, Marcos’s sister, is the whole world. 

The fight for the right (and dignity)

A few years ago, a piece of news in the form of hope established an important link between the research we are developing, the struggles of some families and professionals for the recognition of the right of all people to inclusive education, and the legal reality of our country. The headline could not have been more unsettling: “Justice returns Adrián to mainstream school” (Diario de la Educación, 7/4/2017). “Returns” what the institution itself had expelled, through common practices such as psycho-educational assessments that “are being used as evidence to justify the segregation of certain students considered to have functional diversity” (Calderón & Echeita, 2016:40). In this way, today we are faced with some hopeful news, but before that, other news that was not hopeful has occurred: “The Constitutional Court denies a child with autism the right to a mainstream school” (El País, 2/6/2014). These are realities suffered by Rubén in León, Daniel in Palencia, Gerard in Barcelona, Gloria in Málaga, and another student in Pontevedra, and in Oviedo… And we, the education professionals ourselves, have constituted obstacles to inclusion (Echeita & Calderón, 2014).

Following the testimonies of many mothers, today the right to inclusive education is being a “discarded item”, due to its ineffectiveness in overcoming discrimination. There are norms and guidelines that are clearly contrary to the ratification of the Convention on the Rights of Persons with Disabilities (UN, 2006). This is what many of the families in our study defend throughout the country, in legal proceedings that have even reached international courts. Underlying this is a legal argument: Spanish educational legislation constitutes a systematic violation of the Right to inclusive education. And with this leverage, they intend to shake the Spanish education system. It is no longer just about valuable knowledge, nor about support groups, but about transformative actions. One of the most paradigmatic examples is that of Rubén Calleja: “Rubén suffered rejection, abandonment, and mistreatment at school by some teachers, and the educational administration, instead of protecting and defending the minor, remained silent and abandoned him by decreeing his segregation and social exclusion to a special education center that he has never attended” (Calleja, Calderón & Ruiz, 2015:72). His parents defended Rubén’s right to inclusive education, refusing to enroll him in a special education center, which led to a lawsuit from the Public Prosecutor’s Office for child abandonment. Rubén spent 5 years learning at home with his family. Nine years later, after a ton of suffering, they achieved a pioneering ruling worldwide that calls into question an entire education system:

The […] Committee finds that the State party has failed to fulfill its obligations under articles 7, 15, 17, 23, and 24, read alone and in conjunction with article 4 of the Convention. In consequence, the Committee formulates […]: a) With regard to the complainants, the State party has the obligation to: i) Provide them with effective redress […] b) In general: the State party has the obligation to take measures to prevent similar violations from occurring in the future. (CRPD UN, 2020:13) 

All of this places professionals in an uncomfortable position. It is unbearable that it is not, because we are talking about fundamental rights of our most vulnerable children: 

Sooner or later, we face a dilemma. Do I adapt to what is expected of me, or do I enforce Human Rights? (Raúl, School Counselor) 

It is difficult to explain in words what it has meant to me to hear all these people. It has changed my life, it has changed my way of thinking, it has been a before and after. […] I do not want to continue being part of this form of unconscious (other times conscious) violence that we exercise. (Ana, University student of education)

4. Discussion and conclusions

“Inclusion is a moral imperative. Debating the benefits of inclusive education is like debating the benefits of human rights” (UNESCO, 2020). Despite this, this and other international reports offer data that highlight that educational opportunities are not equal for all students, and that barriers to the presence, participation, and progress of a large part of the student body continue to exist. The research presented in these pages offers a narrative look at this reality overshadowed by the imperative of normality that dominates schools. 

Rescuing and contributing to the construction of counter-hegemonic narratives based on respect for human dignity allows us to turn the past into the present, the distant into the near, the impossible into the possible, and the invisibilized into a palpable reality upon which we can and must act. These counter-hegemonic narratives can open new fields of knowledge that act as resistance to the current oppressions and privileges of the dominant logics present in schools.

To this end, it is necessary to “use research methods that involve the people in the area of study as researchers” (Freire, 1982:30. Own translation). We scientists will not be the ones to change reality. It is the people who live it who have the power, even without being aware of it, to modify it. And for that to happen, research must go to the concrete: what happened to your daughter; the difficulty a teacher encounters in their classroom; the loneliness a child suffers in the playground; the overflowing joy of a family when they feel part of the community; the anguish of a mother at the beginning of each school year; the creativity of a school when it opens up to differences; the intense feeling of building public policies.

At this point, education ceases to be a mere issue that the University or the Ministry considers. Education now begins to be something quite concrete, because people are talking about it. If I am going to talk about education with people, then I have to start from their perception of education and not from my own perception (Freire, 1982:34. Own translation).

Scientific, academic, and professional knowledge, along with the tradition that permeates them, monopolize what is considered legitimate in schools. But there is a whole body of knowledge to be discovered and built from real participation – emerging only when power is silenced – that allows for the weaving of new stories and the construction of new realities from them. The creation of citizen science networks, as well as the emergence of social movements across the globe, constitute niches of resistance to neoliberal policies, and sources of agency and resilience for silenced populations. Thus, structural, relational, and personal realities are woven together. Cognitive, emotional, and discursive realities. Realities that challenge the unjust order of things, and instill hope because they can be changed through our action. How the stories of some people affect others, unknown, distant… becoming part of the same story. 

Reading Rafael’s story has become an invitation to read and reread our story as a family. My story is reconstructed every time I give it a new interpretation. That’s why I thank you for inviting me to look back in order to project myself into a different tomorrow. For a long time, June 2015 had become a paradigmatic milestone in my story. The birth of Gael and the death of my mother in the same week became for many years a break in my story [pausa emocionada], which seemed to have a before and an after that week. [Pausa emocionada]. Returning there thanks to your provocation and the stories of each of the families who participated in this space has allowed me to give new meanings to what was, and to frame it within struggles that go beyond my own story. Allowing myself to rethink myself from other perspectives has also helped me to nuance that apparent break in my story. Birth and death have begun to combine, and to integrate into my story, becoming two sides of the same coin. (Cristina, Gael’s mother, Colombia) 

How to cite this article 

Calderón, I. & Rascón, M. T. (2022). Weaving struggles for the right to education: collective and personal narratives for inclusion from the social model of disability. Pedagogía Social. Revista Interuniversitaria, 41, 43-54. DOI: 10.7179/PSRI_2022.41.03.

Authors’ Address

Ignacio Calderón Almendros. Faculty of Education Sciences. University of Malaga. Teatinos Campus s/n. 29071-Malaga (Spain). E-mail: ica@uma.es.

María Teresa Rascón Gómez.Faculty of Education Sciences. University of Malaga. Teatinos Campus s/n. 29071-Malaga (Spain). E-mail: trascon@uma.es.

Academic Profile

Ignacio Calderón Almendros 
http://orcid.org/0000-0002-7012-2551 
Full Professor in the Department of Theory and History of Education and M.I.D.E. at the University of Malaga. Member of the Research Group Theory of Education and Social Education. He collaborates with activists, teachers, and other researchers in promoting inclusive education, and serves as a scientific advisor in the Education Area of the Ibero-American Federation of Down Syndrome. He is the author of numerous articles and books, notably “Education and Hope on the Borders of Disability” (Cinca, 2014), which has received international recognition. 

María Teresa Rascón Gómez 
http://orcid.org/0000-0002-9635-7228 
Professor in the Department of Theory and History of Education and MIDE of the University of Malaga. Member of the Research Group Theory of Education and Social Education (HUM-169). Her research interests include inclusive education, intercultural education, and attention to diversity. Among her publications are The construction of cultural identity from a gender perspective: the case of Moroccan women (SPICUM), and others co-authored such as The construction of identity in the children of Moroccan immigrants(Spanish Journal of Pedagogy),together with J.M. Esteve and C. Ruiz) and the book Analysis and proposals for a new Education Law (Octaedro), together with I. Calderón.

Copyright © 2015 SIPS. Creative Commons Attribution-Non Commercial (by-nc) Spain 3.0 License.

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