Disabling experiences and inclusive school: reframing the debate in Portugal

ABSTRACT This article aims to problematise the discourses of inclusive education by analysing the experiences of disabled people in the Portuguese regular school system. Individual interviews and focus group, held in different areas of the country, exposed the main debates, contradictions and continuities between policies and practices coming from irreconcilable paradigms. These barriers to learning and participation were traced at the organizational, curricular, and pedagogical levels, and at the socialization with peers, suggesting a political, temporal and contextual transversality of an individualizing and disabling gaze, with immediate and long-term discriminatory, segregating and excluding effects on the lives of disabled people. These experiences could be the basis for recognizing the ubiquity of exclusion in school as we know it, and for creating solidarity and democratic educational communities where these barriers are systematically denatured and eliminated.


Inclusive education
This article aims to discuss policies and practices of inclusive education in Portugal.The Portuguese education system recognises all children and young people the right to participate and learn in regular schools.The analysis provided draws on direct and indirect school experiences of disabled people, encompassing its historical evolution, through the triangulation of their own voices, indirect narratives of parents of disabled children, disabled teachers, and other education-related professionals.Research results bring new light into the ubiquity of exclusionary processes within the school system and education policies (Slee 2013).The proposed analysis of the Portuguese case offers a possible conceptual toolbox to examine policies and practices of inclusive education in other contexts.Such analysis, as it will be argued, is expected to stimulate substantive debates on the educational system telos concurrent with open and daily participatory processes involving the school community.
These findings are part of a larger research project intended to understand the living conditions of disabled people in Portugal. 1 Data was collected mainly through the use of focus groups and individual interviews with disabled people and representatives of local CONTACT Fernando Fontes fernandofontes@ces.uc.ptCentre for Social Studies, University of Coimbra, Colégio de S. Jerónimo Apartado 3087, 3000-995 Coimbra, Portugal disability organizations, aiming at discussing the conditions of social inclusion at local level, and, whenever possible, contextualizing in the individual life stories of disabled people.The different interviews and focus groups highlighted the centrality of school experiences in the production of multiple immediate and long-term barriers in disabled people's lives, and in the creation of the (im)possibility for disabled people to have 'the same choice, control and freedom as any other citizen at home, at work and as a member of the community' (Barnes and Mercer 2006, 33).
These narratives, often marginalized (Booth 1995;Clough and Barton 1995;Allan 1999;French and Swain 2004;Vlachou and Papananou 2015), are central to critical readings that contribute to the destabilization of the regular education system, which is a potential way to act in the face of different forms of exclusion (Barton 1997;Slee 1997;Ainscow, Booth, and Dyson 1999;Ballard and McDonald 1999), namely a substantive critical debate of the regular school as a market of competitive individualism (Moore and Slee 2012).
In Portugal, the right to education is guaranteed and regulated by the Constitution of the Portuguese Republic, in the Basic Law of Educational System (Law 46/86 of 14 October), in the Decree Law 35/90 of 25 January which extends compulsory education for all children including those defined as with special educational needs, and in Decree Law 3/2008 of 7 January, recently amended by Decree Law 54/2018 of 6 July, which provides the legal framework for inclusive education.Portuguese educational policies have been influenced by international agendas around issues of 'education for all' and 'inclusion' (Alves 2019).Within a decade (2008)(2009)(2010)(2011)(2012)(2013)(2014)(2015)(2016)(2017)(2018), since the publication of Decree Law 3/2008 till the emergence of the new inclusive education framework in 2018, the concept of inclusive education became central in the Portuguese political-legal discourse, explicitly incorporating the values emanated from the Salamanca Declaration (UNESCO 1994), and the commitments set out in 2009, when Portugal ratified the Convention on the Rights of Persons with Disabilities (United Nations 2006).
An analysis of recent changes in Portuguese educational policies suggests a steady improvement in the school conditions over time and a successive paradigmatic transition from segregation to integration and from the latter to inclusion (Costa and Rodrigues 1999;Alves 2019).These policy changes are evident in official statistics which reveal an increase of 92% of disabled students attending mainstream schools (despite the lack of specialised resources in most contexts) when comparing the academic year 2010/11 and 2017/18 (Pinto and Pinto 2019, 19).
The concept of inclusive education as a utopia for progress has, however, been questioned (Allan 1999;Barton and Armstrong 2001;Goodley 2017;Moore and Slee 2012;Slee 1997), with the emergence of several voices arguing that the discourse on inclusion lost its initial insurrectionary potential against multiple forms of school exclusion.Plus, these voices have argued that inclusion has been reduced to cosmetic operations performed in the school system that continue to promote the identification of multiple differences as a deficit or something that needs to be fixed in order to fit the educational system (Graham and Slee 2008).Consequently, the prosperity and complexity of the initial inclusive education conceptualization has been limited to the dimensions of funding, specialised support and space in which the educational process will take place (Graham and Slee 2008;Slee 1997;Moore and Slee 2012).
General Comment No. 4 on the Right to Inclusive Education, drawn up by the United Nations Committee on the Rights of Persons with Disabilities, defines the right to a quality inclusive education as an ongoing and participatory process involving the community.Moreover, it stresses that difference needs to be respected for its intrinsic value, and understood as a source of learning and of transformations in the cultural, political and pedagogical dimensions in order to remove structural, environmental and attitudinal barriers that prevent its realisation (CRPD Committee 2016).In the same vein, Booth (1996, 34) clarified that inclusive education implies 'the process of increasing the participation of pupils within the cultures and curricula of mainstream schools and the process of decreasing exclusionary pressures'.
Inclusive education, therefore, requires a profound scrutiny of the meaning of education itself, and a continuous critical look in order to deconstruct its normative centres (Graham and Slee 2008;Greenstein 2016;Slee and Allan 2001), preventing the transformation of inclusion into a mere welcome slogan, while maintaining institutional exclusionary devices (Slee and Allan 2001).Such understanding, in line with the politicisation of disability and of education, marks a paradigmatic discontinuity with functionalist educational models, which naturalized institutional knowledge and practices through rational neutrality, while attributing flaws in the learning process to the individuals.In this regard, special educational needs can be perceived as a functionalist concept, since, although its genesis seeks to replace a biomedical focus for a pedagogical one, it remains marked by 'specialised' practices of diagnostic and rehabilitation that perceive difference as a deficit, thus, creating multiple forms of exclusion, segregation, and material and intersubjective barriers (Allan 1999).
Accordingly, the construction of inclusive education needs to surpass the idea of being a debate amongst specialists, and start to be built from a critical reading along the margins, revealing the power-knowledge relations and discourses within school, and how they shape the school and its subjects, as well as its possible resistance and transgression (Allan 1999;Bajada, Marie Callus, and Borg 2021).
In the case of Portugal, the above referred Decree Law 54/2018 of 6 July, which established the legal regime for inclusive education, reinforced this discursive transition to the concept of inclusive education, here defined as the 'process that aims to respond to the diversity of the needs and potential of each and every one of the pupils, by increasing participation in the processes of learning and educational community life' (Ministério da Educação 2018, 2919).In epistemological terms, the document is framed by a constructive approach of the educational process, and by a biopsychosocial understanding of disability.At the level of inclusion support measures, a multi-level approach is envisaged, advocating universal, specific and additional measures, i.e. measures that are mobilized 'along the pupil's school pathway, according to their [pupils] educational needs' (Ministério da Educação 2018, 2921), which equate, however, with special educational practices and the biomedical model, by involving technicians who intervene directly with the pupil, and health professionals.
Thus, the Portuguese framework for inclusive education has several selfcontradictions, namely, the maintenance of an apparatus of specialists for whom the focus of intervention begins and ends up in the understanding of the pupil as a problem, although it stresses that it is not necessary to categorise each student in order to intervene.In this framework, the concept of 'special educational needs' has been replaced by the concept of 'special health needs', defined as 'needs arising from physical and mental health problems having an impact on functionality, resulting in marked limitations in any body or system, entailing irregularities in school attendance and risk compromising the learning process' (Ministério da Educação 2018Educação , 2920)).
Despite the recent semantic advance, education policies kept a focus on difference resembling 'a euphemism for failure' (Barton 1986, 273), or a justification for the school's inability to educate all children.In this context of changes and regularities in the concepts and practices of inclusive education, this article focuses on the narratives reporting the barriers experienced by disabled people in the regular school system, through their own voices, and indirect narratives of parents of disabled children, disabled teachers, and other education-related professionals.

Contextualising the research
Data analysed in this article was collected within the context of the research project 'DECIDE -Disability and self-determination: the challenge of independent living in Portugal' (2016)(2017)(2018)(2019)(2020).Data collection strategies involved focus groups with disability activists and representatives of national and local non-governmental organisations of and for disabled people purposively selected, and semi-structured interviews conducted with disabled people living in the community or in residential institutions for disabled people.
Individual interviews and focus groups have highlighted the centrality of school experiences in the production of multiple immediate and long-term barriers, affecting the (im)possibilities of achieving a full citizenship and independent life.

Ethical and methodological strategy
Research focused primarily on an ethic of respect for the people involved.Prior to the interview, selected participants were sent a consent form, describing the objectives of the project and the voluntary nature of their participation, the confidential and anonymous nature of the information provided, as well as the possibility of abandoning the process at any time.A paper version of consent form was read and signed by both parts before the beginning of the interview and questions raised by the participants regarding the project or consent form were answered.Moreover, transcriptions of the interviews were sent back to the interviewees for confirmation, and information supplied during interviews could be modified or even deleted, if wished, giving interviewees full control of their words.
The research strategy was designed to maximise the collection of a diversified sample in order to include a wide array of experiences of inclusion.Thus, the distribution of focus groups and individual interviews involved: the different geographical areas of the Portuguese territory, including urban and rural areas and the autonomous regions of the Azores and Madeira; organisations of and for disabled people including impairmentspecific organisations; disability activists focused on demand of different disability rights (e.g.education, independent living).Moreover, it was intended to collect a balanced sample in terms of gender, age, experiences of disabling barriers, and living solutions (living in institutional contexts, living within the community with conventional family and/or institutional support and living within the community with personal assistance).
In the first stage of the research process, a total of 15 focal groups were conducted with the aim of mapping the reality of disabled people in each of the seven NUTS II areas of the country (two per NUTS II) regarding education and training opportunities, employment, health, leisure activities, accessibility and community participation.These focus groups involved 73 participants and included activists and representatives of national and local non-governmental organisations of and for disabled people, family members and education-related professionals close to the daily experiences of children and young disabled people in Portuguese public schools.In the second phase, 82 individual interviews were conducted with adult disabled people.Participants were selected purposively, based on contacts established with local disability organisations or by snowball sampling.The interview protocol aimed to frame the life stories and living conditions of disabled people (social support, socioeconomic, contextual and professional conditions); to identify the challenges and opportunities for self-determination and decision-making; and to identify experiences of oppression, discrimination and exclusion, as well as the strategies to overcome these barriers.Educational experiences were intentionally approached in the first question of the protocol ('Could you please tell me a little about yourself and your life?') as one of the dimensions explored.These experiences emerged, also, when questioning about people's lives in the community, self-determination, needed support, experiences of discrimination and/or violence, or when asked to describe their dailyroutine.The collected sample of interviewees was balanced in terms of the gender (female participants: n = 37; 45%) with ages ranging between 19 and 62 years old (M = 39.0,SD = 11.3).Most participants did not have a college degree (n = 65; 79%), with as much as about 13% (n = 11) of the study sample indicating not to have completed any formal education, 22% (n = 18) to have completed a maximum of 6 years of school, 26% (n = 21) completed 9 years of school, 18% (n = 15) completed 12 years of school, and 17 (21%) participants having completed a college degree.The study sample was also balanced in terms of geographical distribution: 13% (n = 11) lived in the Norte Region, 12% (n = 10) in the Centro Region, 11% (n = 9) in the Lisbon Region, 13% (n = 11) in Alentejo, 15% (n = 12) in Algarve, and 18% (n = 15) and 17% (n = 14), respectively, in the autonomous regions of Azores and Madeira.Around a third of the study sample was employed (n = 25; 30%), while the remaining were either student (n = 13; 16%), unemployed (n = 20; 24%), retired (n = 13; 16%) or pensioners (n = 11; 13%).Within those interviewed, four people were currently teachers of regular basic education.
Interviews were conducted face-to-face, and time and space was suggested by the interviewee, in order to reduce potential constraints deriving from the interview process.However, recognising that the interview was a co-constructed moment surrounded by undetermined complexity, ambiguity and power relationships (Scheurich 1995), the research team kept the research agenda explicit and respected the times, desires and interventions of participants, namely when they subverted or redirected the analytical focus of the investigation.

Analysis and codification strategy
The analysis of the interviews followed a primarily inductive reasoning (Strauss and Corbin 1990), through which a codification system was constructed, based on the reading of all the statements, directly and indirectly, related to school experiences.The emerging codifications were peer-reviewed, triangulated with each other, and then triangulated with other data and information collected during the research process.Subsequently, these emerging codifications and their subcategories, directly and indirectly related to school experiences, were confronted with the dimensions of inclusive education contained in the General Comment No. 4 on the right to inclusive education, namely: existing legal, architectural, organisational, pedagogical, curricular and social barriers; and the creation/absence of quality, difference-respecting and non-discriminatory educational processes (CRPD Committee 2016).This confrontation aimed to raise the issue of possible absences and invisibilities regarding the current guidelines for inclusive education.The intersection between the various experiential narratives, and the selection of the voices presented in the results section, was carried out by taking into account their exemplary force to highlight general and problematic characteristics (Flyvbjerg 2001) of the exclusion processes within school.

The contradictions of the inclusive school
School experiences are determining for creating future conditions of inclusion and of independent living for disabled people.Thus, the school can be a place of multiple disabling barriers and, axiomatically, holding 'the potential to be a theatre for enablement.' (Moore and Slee 2012, 233).However, the experiences that related to discourses on inclusive education appeared in contradictory terms.In one of these poles, inclusive education was understood as contemporary progress, an acquired right, when compared to past school experiences characterised by total segregation and exclusion, and access to school was understood as a charity or the exception.Now there is talk of inclusion, in my day none of this was spoken about.In my day, having a child . . .a disabled person in a classroom. ... It didn't exist, almost.Few were there . . .and if they were, it was because there were parents like mine, who fought for us to study and to be normal people.(. ..)I didn't have any adapted plan.I only had support for the disciplines I needed, but nothing at all.And, at the time, I had the support of a third person provided by the school and the college.But because I asked.I struggled -and my parents -for that to happen.Because it was very complicated.Now, there's all of that, but when I started, there was nothing.And I started . . .and my mother started fighting and telling me to do what others did.At my pace, but just like the others did.(Female, 32 years old, Norte Region) On the other side, there is a discrepancy between the framing legal documents highlighted above and the school practices, evident in the inconsistency between these political guidelines for inclusion and the reality of education offered.This surfaced in the proliferation of mere integration rather than inclusion practices; in the widespread use of selective and additional measures provided for by the law; and, in the continuous State Budget cuts, which resulted in the insufficiency of material support, of specialist teachers, of technicians and of school assistants.These ongoing discrepancies were described by the interviewees as a regression in the quality of the education provided.The words of this primary school teacher are symptomatic of these processes: We went backwards. ..I feel like I was a little privileged [. . .] the problem is that it's not so obvious anymore with all the cuts that happened in special education, I've always had support!Always![. ..]Now it's to integrate kids into schools, and that's it!Kids are all in schools!The inclusive school for everyone, but then people are lacking the necessary equipment, in order to provide support. ... (Female, 33 years old, Norte Region) There is no point in having a legislation that advocates this and that support, and telling that the school must have conditions, and that the student only goes to a specific individual curriculum [CEI] as a last resource. ... In fact, it is very easy to transfer a student to a CEI! (Focus Group, Norte Region) The described deterioration of the quality of the school education coexists with pressures and arguments in defence of past practices of referring these children and young people and bring them into special education, given the potential risk evidenced by regular schools (Moore and Slee 2012, 226).In this sense, the education offered is experienced as of less quality, generating barriers to the construction of learning and to the autonomy for disabled children and young people, directing them to alternative pathways and individualized curricula, or specific responses outside the classroom and the school itself.
Young people who have made their schooling through the inclusive school and have not even learned to write their own name.They were always relegated to a separate space, in order not to bother the classes of people who were, at last, learning.Why?Because they have such a serious impairment that they can't understand anything the teacher is saying.So we made an exclusion within the inclusion.(Focal Group, Alentejo Region) The defence of these processes of selective segregation is often presented, within the special educational needs and special education literature, as a realistic argument regarding current practicalities in a highly competitive school system reality, and as a criticism to the demand for full inclusion as extremism, what has been described as a 'trope of common-sense realism or pragmatism' (Done and Andrews 2020, 448).These protective arguments have serious consequences for the lives of disabled people increasing or justifying disabled people's early dropping out from schooling, which often results in the multiplication of social and occupational barriers and exclusions, or in narrowing the possibilities of an independent living.Occupational activities centres (CAOs), current activities and training centres for inclusion (CACIs) emerged as the paramount social response outside the educational system for those aged 16 years old and over, aiming to provide support to young people and adults with cognitive and other types of impairment, meaning that those perceived as unable to adapt, or whose diagnosis is perceived as not susceptible to rehabilitation, continue to be, literally, excluded from regular school.
It is something that we are also trying to fight against, because in our legislation everything is very clear, and everything is beautiful, but in practice it is not the case, because they end up not having the support they need.And so, they're placed, very often, in these units [Specialized Support Units for the Education of Students with Multiple Impairments and Congenital Deafblindness] and, at the outset, we are cutting all chances of school success.We've also verified. ... Now we are following this process with younger people.Those we have had until now, reach compulsory schooling, have a certificate of attendance from that education, of the basic or secondary cycle, and then end up going to CAO's [Occupational Activities Centre] because they are also unable to progress in academic terms.(Focus Group, Centro Region) This tension, between the understanding of inclusive education as a form of progress or as a human right and the degradation of the quality of school education along with the argument of lack specialized educational resources, hinges around a narrow perspective of inclusive education, limited to the dimensions of space and time where the educational practice takes place, and the (un)availability of specialised resources.Moreover, this understanding is marked by multiple invisibilities revealing an unbreakable connection between the irreconcilable paradigms of inclusion, special educational needs, and special education (Graham and Slee 2008;Slee 1997;Moore and Slee 2012).This continuity, which converges on the problematisation of the individual and his/her special educational/health needs, is particularly evident in the diagnosis and referral of children to services considered most appropriate, according to technical-pedagogical criteria.The following testimonies, given by a mother of a child diagnosed with special educational needs and of a young person unable to access the desired professional training, explain these diagnostic and referral processes.As it is manifest, the weight of individualising (medical or psychological) discourses, ruse or governs the self-determination of children/ young people, and their family, in choosing the educational option most adjusted to their difficulties/needs.I would like to finish the high school level and become a massage therapist, which I'm very good at.But they tell me that I don't have the skills for that.(. ..)But they are the ones who know, not me.(Female, 29 years old, Autonomous Region of the Azores) At school things go like this: 'This kid can't go to the classroom.'The kids are placed in multi-impaired rooms.(. ..)What is the criterion?'They won't be able to learn!'And I usually ask them if they take this test to everyone, before they get in, and they tell me 'Oh, no, no'.So, why do they do it to these ones?Why do they have to prove that they will be able, at the end of schooling, to have made the necessary acquisitions and learning?But it is like that!Students with disabilities continue to be out of class, continue to have no access to the national curriculum, continue to have specific individual curricula, which are very beautiful.If you want, I can send you a schedule of a specific individual curricula with subjects like: 'Vegetables and garden subject' -are we at school?!. ... 'Special education, physiotherapy'. ... This is the schedule that a student with Trisomy 21 has.(Focus Group, Alentejo Region) Thus, the experiences of disabled children and their families reveal a continuity or a reinvention of the special education paradigm, in the age of inclusion (Slee 1998, 125).Moreover, issues of inclusive education are strictly focused on the dimension of individual difference, regarded as a problem, where the role of school is limited to provide a welcome offer; or, to identify, select, and educate/rehabilitate children and youth who do not conform.For those perceived as unable to adapt or whose needs require special responses, in another time and space, the offered solution is segregation.In general, vicious circles are generated between negative beliefs about learning difficulties, placement in segregating learning environments or lower quality curricula, and consequently these processes reduce educational opportunities and raise barriers to inclusion in the future life (Alderson and Goodey 1998;Greenstein 2016).

Schools and disability: questioning the normative
The analysis of disabled people's testimonies regarding their experiences at school revealed two main dimensions: an academic-pedagogical and a social dimension.Although individual interviews differently emphasised the academic and social barriers, these two dimensions generally imply each other, and combine with other barriers, namely with accessibility and mobility.As data reveals, early drop-out from compulsory schooling emerges a major consequence of the combination and constellation of different barriers.Moreover, mobility and accessibility barriers that hinder or obstruct access to school or to the classroom, when combined with situations of social and economic vulnerability, which is often the case due to the association between poverty, social exclusion and impairment, impacts greatly on the reported experiences of school life.
Many times I watched my colleagues playing through the window, because they didn't feel like taking me down there and bring me back (. ..)There were colleagues of mine who also wanted to play beside me and they often wouldn't let them.(Female, 35 years old, Lisbon Metropolitan Area) Data analysis also showed that individual experiences regarding the pedagogical component were highlighted by those interviewed but not problematised.Exceptions to this pattern, as the following quote mirrors, despite less present in the interviews conducted, revealed the presence of a social constructionist understanding of the formal education structures, enabling other (non-individualist) frames of the concept of inclusive education: Regarding the school path, I feel that, in some way, there were some difficulties due to the institution itself, due to education, '[be]cause I think that education in Portugal is not ready for disabled people.In the case of visual impairment, the classes are based on expository methods, and it is a matter of the person having to adapt, and not the teaching strategies adapting to the person.(Female,20 years old,Algarve Region) This critical reading of the deficit model, which remains hegemonic in the Portuguese education system, evidences that the removal of school barriers does not depend exclusively on higher funding or on an increase of specialised resources.The allocation of financial resources to public schools is, however, essential for the promotion of inclusive education, providing that it is not captured by a functionalist education model.In fact, as data analysis exposes, the elimination of school barriers requires a transformation of the schools' norms and habits, namely the end of the one-size-fits-all approach.The collected narratives illustrate this possibility of transforming the pedagogical dimension in a way that respects human diversity.The following testimony, given by a person with a hearing impairment, is clear regarding the importance of considering minor changes in pedagogical communication: My greatest difficulty at school was the teachers who, as they approached the curricula content, turned their back to write on the board and I couldn't understand it.(Male, 39 years old, Autonomous Region of the Azores) Even in the situations where the interviewees report experiencing a flexibility of the school standard, namely regarding summative assessment procedures, data analysis denounces that recognition of difference was based on a hybridisation between the 'deficit model' and the 'curriculum model' (Allan 1996, 226;Oliver 1990, 82), resulting in the implementation of positive discrimination measures, based, once again, on an individualisation of learning related-problems.These individualized positive discrimination measures, by focusing on individuals rather than the system, prevent an in-depth questioning and transformation of exclusionary norms.Furthermore, positive discrimination measures were perceived as a violation of the principle of equal opportunities, generating feelings of injustice and hostility by their peers, and, therefore, disabled people's discomfort.
Legally I had more time and I always used that time.So, my colleagues started to envy me, because I had good grades (. ..)At the time I cried a lot, it shocked me a lot.All because of the tests, in which I had more time.That I was granted by law.I had twice the time to do it.... (Female,35 years old,Centro Region) Regarding the social dimension of school experience, the interviewees underlined that teachers and peers may assume different roles and functions in relation to disability, namely, collected testimonies reveal positive effects (feelings of respect for difference and self-determination; absence of prejudice; perception of adequate support) and negative effects (complete lack of social life and of friends; situations of overprotection or eminently destructive interactions) of the school socialization process.Experiences with negative effects, which can assume tacit or explicit contours, include charitable attitudes, disability discrimination, peer groups' exclusion inside and outside the school space and verbal and physical violence.
At the time I suffered from bullying.Even after I changed tutors, it continued, because it wasn't worth complaining to the class director or anyone at school (. ..)My teachers understood it as a joke (. ..)But physical violence, I only had one episode of spitting me in the face.(Female, 24 years old, Algarve Region) I was doing adapted physical exercise.My colleagues found it funny, filmed it and posted it on YouTube.(. ..)When I arrived at school, everyone already knew who I was, everyone was already laughing at me, and everyone was pointing their finger.At that time, it affected me a lot (. ..) the grades started to fall, until I decided -´its' not worth it.(Male, 35 years old, Autonomous Region of Madeira) As data analysis reveals, despite being generally perpetrated by peers and, in certain cases, by the action or inaction of teachers, these forms of interpersonal violence need to be contextualized within the organisational culture of the school.Recalling Oliver's words, one should 'not assume that the institutionalised practices of society are nothing more nor less than the sum total of individual and collective views of the people who comprise that society' (Oliver 1990, 83).
Disabled people are, therefore, exposed to diverse disabling conceptions, some of them reinforced at and by the school.Testimonies collected reveal, notwithstanding, an active attitude of some disabled children and young people by challenging the identities that are ascribed to them.In Allan's words (1996, 5-6) it is a 'desire to highlight those characteristics and talents which tend to be overlooked by a dangerous assimilating gaze which seeks out only the negative aspects of difference and forces children with special needs to experience "social death"'.
At my school they also told me 'you're crazy, you're ugly. ...' All these comments were said.It was at regular school, and my colleagues sometimes didn't talk to me.(. ..)But I have always tried to show people that I will also be able to learn to read, I will also be able to write, I will be able to go to the university.(. ..)My dream was to be an architect (. ..)I know how to read and write very well, I worked hard for it. . .What people say is normal. . .for me we're all normal, everyone has the right to make their own life.(Woman,25,Centro Region) As mentioned above, educational policies for inclusion in Portugal remain based on an official (legitimate and legitimising) representation of disability as an individual's deficit, which must be compensated for, or controlled.If these naturalised facts do not reverberate on a common sense inhabited by aversion, anxiety and rejection (Oliver 1990), at least they produce negative feelings or indifference towards disability, or towards disabled people.Moreover, this form of violence, in its manifold dimensions, despite the implementation of anti-discrimination measures, leaves the organisational culture of the school intact.
I was at a school that had no access.And the school principal did nothing to create accessibility (. ..) at that school I had a teacher who didn't want to change the location of the classroom (. ..) and that teacher -that's why I moved away from that school -he teased me and never approve me until the end of middle school (. ..)And he was always saying to my colleagues, when I wasn't at class -'That poor sick girl . . .don't she even think to come here to distract my class!' (. ..) 'The poor sick girl isn't coming?''(Female, 28 years old, Autonomous Region of the Azores) This testimony is exemplary of the institutionalised discrimination processes and the confluence of political, organisational and attitudinal dimensions.In this context, the cultural dimension -even when not legitimised -is based on an institutionalised perspective that sees impairment as something undesirable, or a threat to those socially understood as normal.The violence exerted in the experience described above, incompatible with any definition and/or practice of inclusive education, is not foreign to school, understood as an arena of competitiveness, where justice is defined as meritocracy, where pressures accumulate to perform efficiency calculations regarding resources spent and school results obtained, and where teachers' subjectivities are regulated through the neoliberal technology of performativity (Ball 2003(Ball , 2013;;Corbett 1999).
This situation also reverberates the invisibility of disabled people in Portuguese society and the absence of disabled role models.This is marked in the testimony of one primary school teacher interviewed, where she reflects on the positive effects of being a disabled teacher in regular schools, including to generate acceptability and respect, to deconstruct stereotypes and prejudices.to raise critical awareness of naturalized and oppressive ways of teaching.At the same time, considering the curricula silent on disability, she underlines the importance of carrying out an explicit critical approach to disability as a form of oppression (Erevelles 2005), namely through citizenship education.The absence of disability issues, and its intrinsic value as a source of learning for inclusive education, is thus partially addressed.I think I've been leaving a positive legacy on my students, either in the way I approach them, or because I always try to communicate in a different way, and it is in this difference that I want to make a difference.(Female, 50 years old, Norte Region)

Substantive alternatives
The multiple, past and contemporary, experiences of disabled children and young people at Portuguese regular school collected, converge into educational practices that are not aligned with the concept of inclusive education, as it is defined under the Convention on the Rights of Persons with Disabilities, namely, in the General Comment No. 4 on the right to inclusive education (CRPD Committee 2016).These experiences evidence a clear continuity of the concepts and practices derived from the special education and the special educational needs paradigms.As data reveals, these two political paradigms are fed by a regular assimilationist model that rarely directs its gazing devices to its own structural, environmental and attitudinal barriers.
To this end, the paradigms of special education and special educational needs continue to operate through 'productive' identification of difficulties (in access, participation and success) ascribed to the child and to his or her family context and to focus on individual rehabilitation interventions, both inside and outside the school.
However, this does not correspond to a complete dissonance between the educational policies and the educational practices.In fact, the continuity of non-inclusive practices inside the educational system is stimulated by the non-paradigmatic disruption of the legislation itself, which includes segregating and excluding procedures.As example of this is, again, Decree Law 54/2018 of 6 July, the current legal framework for inclusive education in Portugal, which is still operationalised through technical -medical and pedagogical -measures that focus mainly on the students' limitations of the body.Moreover, the needed debate on the structural, epistemological, political and ethical dimensions of education, essential to deconstruct its regulatory centres and exclusion institutional arrangements (Barton and Corbett 1993;Graham and Slee 2008;Greenstein 2016;Slee and Allan 2001), is eliminated by a school norm that remains invisible in its supposed universality (Davis 1995(Davis , 2017)): universality of the school disciplinary devices and its spatial and temporal organisation; universality of buildings and school administration; universality of knowledge and values that are considered important in the curricula and environment; universality of conceptions of meritocracy as justice, and evaluation as performance; and universality of the neutral dimension of education.
The debate on inclusive education is, thus, reduced to the location of the educational process and to the availability of adequate resources.The aforementioned continuity between paradigms has left disabled children and young people in a conundrum, in a school context where, at best, intermittent forms of integration are practiced, and where expert epistemologies proliferate, putting pressures on a return to specialised resources from special education, which are missing in regular schools.Disabled people experience, thus, multiple barriers, and multiple forms of segregation, discrimination and exclusion, with immediate and long-term effects in their lives and life opportunities.
But are we talking about inclusion? . . .Perhaps integration, not inclusion.(. ..)There is also a pressure from the reference school, the school where support is guaranteed.Outside the reference school it is a jungle.Because they can either have support or not.(. ..)There is still a great pressure on parents to put their children attending the reference school.(Focus Group, Centro Region) As a result, the self-determination of disabled children and young people is, not only, or necessarily, prevented, but also, disciplined or governed by biomedical or biopsychological arguments, very difficult to oppose by those implied.Furthermore, as Moore and Slee (2012) warned, the expansion of a market model in education, based on rankings and competitive individualism, disseminates disinterest in these children who represent a risk to school performance.
The analysis seems to indicate that inclusive education in Portugal is based on a double bind, on the one hand, the demand for resources, based on a special education perspective, hinders other understandings of inclusive education; on the other hand, in a supposed paradigmatic transition to an inclusive school, where inertia keeps conceptions and practices unaffected, the lack of resources may produce school drop-outs and a greater exclusion of children previously integrated into the school.Therefore, a simultaneous transformation of educational policies, organisation and school ethos is necessary.Inclusive education implies, then, a substantive transformation of the meanings, values and norms of the school itself.A transformation, aligned with the aforementioned General Comment No. 4 on the right to inclusive education, based on the respect for difference and its intrinsic value, and on a radical democratic participation of the whole community.Participation of the school community is critical for analysing school norms and recognise those who are potentially exclusionary, rather than neutral/universal.This transformation implies overcoming hegemonic perspectives that see inclusive education as an exclusive specialist domain, overcoming an individualizing and problematizing frame of difference, and overcoming an oversimplification of inclusion as a simple demand for further specialized resources to diagnose and rehabilitate.
Educational policy plays a key role in recognising and valuing groups traditionally excluded by the educational system, and challenging education as an inherently exclusionary phenomenon, centred on the competition for the best results, where normal performance is crowned by its results (Ball 2013;Corbett 1999).Therefore, a nonindividualistic and non-competitive framework is needed, one that supports educational communities that value, and are valued for, the solidarities it builds and one that contradicts the logic of performance and productivity responsible for creating ranks of students, teachers, schools, and educational systems.
As it is evident in our analysis, the transformations required to remove the reported barriers in these narratives relate, mostly, to the communicational domain and would require the construction of an 'unpretentious education' (Bajada, Marie Callus, and Borg 2021, 19), i.e. an ethical work involving the entire community (Allan 1999;Chantler 2016;Greenstein 2016), where spaces of dialogue are opened for listening to the margins, based on an understanding of difference as a source for learning.The proposed radical democracy contrasts with an aggregative model of democracy (aggregation of individual interests and preferences) and is aligned with a deliberative model where decisionmaking processes are based on the participants' arguments.The daily operationalization of substantive inclusion depends, thus, on these radical democratic participation processes that seek to avoid forms of external and internal exclusion.This is a form of democracy that questions, and is questioned about, who is included and who effectively participates in internal deliberation (Young 2000).Educational radical democratic participation concerns, therefore, a truly consideration of the margins, i.e. those traditionally unheard and not considered, in the (re)definition of the meaning of education, of its norms, values and practices.A democracy that questions, in this specific case, why disabled children and their peers cannot participate in the definition of the school organization, and in the elimination of multiple school barriers.It presents, thus, democracy as way of participation that feeds and is fed by an inclusive education policy, which questions, again, why can't a school community be valued for the solidarity it builds?

Reopening the debate
In sum, the different barriers identified by the analysis of disabled people's experiences of the school system, broadly echoed during the interviews, are not intended to provide an exhaustive picture of the reality faced by disabled children and young people in school in Portugal.Although present-day experiences regarding inclusive education policies were brought indirectly through family members and school teachers of disabled children, the triangulation of multiple past and contemporary narratives evidence that there is a continuity of the previous functionalist paradigm of education and the maintenance of exclusionary practices, despite apparent transformations.
These experiences are evident regarding the way in which inclusive education has been defined and operationalised, regarding how these understandings have sustained school practices that continue to focus on difference as a problem vis-à-vis the school norm, which inevitably results in immediate or deferred forms of exclusion.This article proposes, therefore, the need to follow an alternative path based on recognising the ubiquity of exclusion in school as we know it (Slee 2013), and on solidarity educational communities based on a radical democracy through which barriers to learning and participation are systematically identified and removed.Moreover, this would mean the end of inclusion understood as an adjective, a paradox, or an appendix to a competitive market, in order to become the central telos of the Basic Law of the Educational System, schools and their communities.This transformation, however, depends on the willingness to return to a basic question: 'what kind of society we should have and what kind of education should be created to realise that society?' (Hargreaves 1982, 226).
The multiple current and past experiences of disabled people at schools in Portugal allow us to reaffirm that inclusive education involves a more substantive debate and transformation.A process that is, also, uncertain and built at every moment, one that cannot be completely defined, nor operationalized, in a closed/ systematic way.
The new educational policies on inclusive education in Portugal aimed to respond to the diversity of the needs and potential of each and every one of the pupils by increasing their participation in the learning processes as well as in management of school life.This article, by confronting the narratives shared by disabled people with this new inclusion educational policies, underlines, however, the lack of transformations on the cultural, political and pedagogical dimensions of the school system, essential to reduce exclusionary pressures.Yet, as Both (1996, 34) once cautioned 'to attempt the first without the second is self-defeating'.