Working with Families for Inclusive Education

Navigating Identity, Opportunity and Belonging

Dick Sobsey, Kate Scorgie, Chris Forlin

• Publisher: Emerald Publishing Limited
• Year: 2017
• Print ISBN: 9781787142619
• eBook ISBN: 9781787430273
• Topic: Education
• Subtopic: Inclusive Education

This book explores personal, family and theoretical constructions of inclusion and offers evidence-based strategies and resources to foster parent-professional, home-school collaborative partnerships. It explores working with families to secure identity, opportunity and belonging within school settings and beyond. It does so by means of a rich international blend of scholarly articles and personal reflections. 

The first section examines personal, family, and theoretical perspectives on ways in which existing systems and structures define and influence inclusion of persons with disability and their families in school and workplace settings. It invites reflection on how we might come together to create more inclusive communities through mutual understanding and valuing. Section two presents a number of evidence-based practices, strategies, and resources that can serve to guide family members and professionals as they work together to build collaborative partnerships and inclusive school communities from preschool through transition to post-secondary and vocational settings. 

This book invites us to deeper understandings of collaboration, to engage reflection from diverse perspectives. It reminds us that at some level we are all navigating identity, opportunity and belonging; that each of us needs those who challenge us to see beyond our assumptions, whose ideas shape and sharpen our own.

SECTION II
FOSTERING COLLABORATIVE PARTNERSHIPS FOR INCLUSION: FRAMEWORKS AND STRATEGIES

“DIAGNOSING” THE NEED OR IN “NEED” OF A DIAGNOSIS? RECONCEPTUALIZING EDUCATIONAL NEED

Juho Honkasilta

ABSTRACT

This chapter is based on compulsory school experiences of students diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) and their parents in the educational context of Finland. Located in the theoretical framework of Disability Studies, the chapter aims to contribute to theory of inclusive education by initiating a new dialogue on conceptual foundations of inclusive schooling. In this regard, the chapter first deconstructs the concept of educational need that stems from the field of traditional special education as contradictory to the original ideals of inclusive education. It then moves on to reconstruct the concept of educational need in accordance with the foundational values of inclusion, that is celebration of human diversity and resistance to dichotomies of ab-/normality and dis-/ability and proposes an approach for future implementation of inclusive education.

Keywords: ADHD; disability studies; inclusive schooling; ab/normality; dis/ability; discourse

A regular morning. I wake up to the alarm clock ringing. I shut it down and fall back asleep. I wake up to someone shouting. My mother is in the doorway, scolding. I’m late again. I throw my backpack over my shoulder and leave for school. It’s an immensely sad feeling; what’s the point in all this. How did we get here?

Confusion, blame, warnings. It’s hard to remember the happy moments. I know they existed – they had to – I just don’t remember. I hear I was wild as a kid. Cheerful, active, happy maybe, but wild. You would think they could have brought me to a different kind of understanding of myself. Why exactly was that label chosen to describe my qualities and define who I am? It wasn’t the only label I got; over the years I’ve also learned to understand myself as stupid, lazy, mean, listless, argumentative, undisciplined, and badly motivated. My folks came to school for meetings all the time. I remember often thinking to myself what the f*** was wrong; it seemed that all the adults were shouting all the time. I know they meant well – of course they had to – I just didn’t believe them. It didn’t come through.

A pill and a label. My breakfast now came with a pill. The adults around me seemed hopeful, even relieved: my parents and teachers were smiling again, and fewer school meetings were set up. The pill started to define the quality of my daily life. And I started to be defined by the letter combination ADHD. It was weird. Partitions appeared at school. I was isolated from peers who had once been friends, but it was argued my motivation had increased. I learned that even if I was wild and lazy, it wasn’t my fault, even if the fault was in me. I was at the same time ill and normal. I was bullied and seen as a bully. I pulled away. It seems they don’t listen to me; never really hear me. Well, it’ll be OK; junior high is over soon and my whole life is ahead … As long as I learn to ask that I’d be listened to and supported in things that are important to me. As long as I learn to forgive – adults, peers, myself. But what if nothing changes ….

The above imaginary, provocative story of a young person’s life trajectory serves several functions. First, it illustrates a master narrative of Attention Deficit Hyperactivity Disorder (ADHD), a neurodevelopmental (American Psychiatric Association, 2013) or behavioral and emotional (World Health Organization, 1993) disorder characterized by impairing behavioral features, such as distractibility, restlessness, and impulsiveness. This master narrative also explains the higher risks of social exclusion among children whose self-control and/or interaction skills do not meet the expectations of a social environment. It suggests a mindset that maintains that a child’s deviant behavior is rooted mainly in natural or biological causes, independent of the value-laden cultural and social practices embedded in the environment in which the child functions. Thus, diagnosed children “suffer” from a neurodevelopmental condition owing to which they are at risk of developing adverse life trajectories, such as lack of school completion, unemployment, relational difficulties, or substance abuse, if the condition is not identified and adequately treated early on.

Second, the scenario reflects varying discourses present in my interview research on ADHD conducted with 18 mothers of children diagnosed with ADHD and 13 diagnosed youth (aged 11–16 years) in their narratives regarding school going in Finland, upon which this chapter premises (Honkasilta, 2016). Finally, the account suggests a representation of inclusive education that is situated in a psychomedical discourse emphasizing need and directed by the language of special education, which is commonly integrated into the daily activities of homes and schools. In this regard, the narrative resonates with Adam’s (2010) notion that “‘inclusion’ has become more concerned with identifying and containing need than in meeting it” (p. 77).

In this chapter, by adhering to the theoretical framework of Disability Studies, I respond to Danforth and Naraian’s (2015) call for initiating a new dialogue on conceptual foundations of inclusive schooling among educational scholars in order to generate a transnational theory of inclusive education. I first use ADHD as a platform to explore criticism regarding current conceptualizations of inclusive education which regard special education knowledge as a necessary bedrock for achieving the instructional and social goals of inclusive education. I further focus on deconstructing the concept of educational (special or remedial) need as contradictory to the original ideals of inclusive education, which focused on celebrating human diversity. Finally, I propose an approach to inclusive education for future implementation, by reconstructing the concept of educational need in accordance with the foundational values of inclusion, based on humanistic psychology. I argue that inclusive education cannot be fully achieved solely through directive or material changes related to pedagogical practices but, and fundamentally so, through a change in mindset manifested in everyday social and discursive practices shared by home and school.

MAINTAINING THE STATUS QUO: CURRENT CONCEPTUALIZATIONS OF EDUCATIONAL NEED

Meeting students’ individual educational “special” needs has become an emergent trend in contemporary compulsory educational policy-making rhetoric and practice, especially in Western developed countries. In theory, this seems to live up to the foundational ideals of inclusive education. In reality, however, this depends on which of the many interpretative frames or discourses regarding inclusion and inclusive education one adheres to (Ainscow, Booth, & Dyson, 2006; Armstrong, Armstrong, & Spandagou, 2011; Dyson, 1999; Walton, 2015) and how practices deemed inclusive are perceived and experienced by the stakeholders in the first place (i.e., students, parents, school personnel). The core of inclusive education in its “broad” sense is to respond to learner diversity and the barriers experienced by learners, which are embedded in existing practices and ways of thinking (Ainscow, 2005, 2007; Ainscow et al., 2006). However, the contemporary enactment of inclusive education focuses on diversity of learning largely in terms of measurable academic process, progress, and performance (Armstrong et al., 2011). Based on the medical model of disability, this tends to mean that a diagnosis of a certain kind is followed by identification of distinctive pedagogical approaches tailored to specific “needs” associated with the impairment, disability, or disorder. Disability, therefore, is rooted in nature (e.g., genetics or neurobiology) and located within an individual. Across the years inclusion and need rhetoric have merged with traditional special education practice and rhetoric (Graham & Slee, 2008; Miles & Singal, 2010).

However, such rhetoric of inclusion does not by any means guarantee inclusive education, since the very concept and its realization into practice is fundamentally predisposed to exclusion (Armstrong et al., 2011; Graham, 2015; Graham & Slee, 2008; Slee, 2013). Slee (2013) notes, that

[W]e can tread the traditional special educational path and call it inclusion, but we will create more strangers, more surplus children and more exclusion. This means that we need to carefully examine proclamations of inclusive education. Many of those who describe themselves as inclusive educators are not looking for education or social reform to build engaging communities; they seek clients to practice on. (p. 906)

By exclusion I refer to both (1) social practice, such as the processes that deny the benefits of a particular classroom or school owing to the perceived attributes of the student, and (2) discourse practice, such as denying the establishment of a social operating environment that embraces human diversity and acceptance of others and self. As noted by Vehmas (2015), the debate surrounding inclusion is in essence an empirical dispute about the morally, politically, and pedagogically good or bad outcomes of inclusive versus segregated arrangements. In this chapter I opt out of this dispute regarding arrangements of inclusion that by nature may promote exclusion. Instead, I want to focus on prevailing discourses present in the current practice of inclusion that undermine inclusive education. I want to clarify at the outset that I am not out to trivialize special education per se. The domain of special education has contributed to the movement toward what Ainscow et al. (2006) term a “narrow” definition of inclusion by promoting the participation and learning of specific groups of student, such as students with certain impairments (i.e., absence of ability or lesser ability) or those labeled as “gifted.” It is however the discourses of norm and deficit, mainstream and special, adhered to and reproduced in the very grouping and labeling of students of “specific kinds” that simultaneously pose barriers to the broader perspectives of inclusive education by ignoring some of its quintessential values.

The inclusive education agenda originated to protest against the status quo of schooling that creates and maintains dichotomies such as mainstream–special, able–disabled, and fundamentally, normal–other. Situated in the social interpretation of disability,¹ it contrasts with traditional educational views that maintain disability as innate individual deficit (i.e., medical model) and disadvantage and exclude people deemed impaired (see, e.g., Armstrong et al., 2011; Thomas & Loxley, 2007). In this light, it is argued that the present day conceptualization of “inclusion” paralleled with special education is a watered down feel-good rhetoric of educational policy-making that masks and protects the very status quo the inclusive education paradigm arose to oppose in the first place (Armstrong et al., 2011; Graham, 2015; Graham & Slee, 2008; Slee, 2004) – it is “a strategic cover for traditional, deficit-based practices” (Naraian, 2013, p. 361).

There are two characteristics of discourse that guide further elaboration of above claim. First, discourse(s) “form the objects of which they speak” (Foucault, 1972, p. 49). Pedagogical discourses based on the medical model of disability are pervasive throughout a child’s schooling, as presented in the opening narrative. Indeed, explaining school behaviors, implementing pedagogies, and planning educational interventions, as well as involving parents in school, are built on the idea of an object of certain kind (e.g., “ADHD student”) formed by psychomedical discourse (see Hjörne, 2006; Hjörne & Säljö, 2014; Honkasilta, Vehkakoski, & Vehmas, 2015). However, when complex social and educational problems are reduced to a psychomedical deficit using the language of labels, disorder, and dysfunction – that is, a child is “special,” “normal,” “gifted,” “ADHD,” “autistic,” “disabled,” etc. – one may internalize problems as solely based on the individual (Brady, 2005; Harwood, 2006). And, when internalization of deficit-based language and discourse becomes part of a child’s worldview and self-perception, identity construction can be affected, as the child may perceive of him/herself as fundamentally flawed – a view that the use of diagnostic labels promotes (Brady, 2005; Honkasilta, Vehmas, & Vehkakoski, 2016).

The second characteristic of discourse that maintains the status quo is that agents have limited access to discourse(s) (van Dijk, 1996). Kittay (2006) suggests that the language of disorder and dysfunction creates a concept of the ideal in relation to which “those who inhabit the space of the non-normal” usually “occupy positions marked as not valued, not desirable, stigmatized” (p. 96). Thus, a child with a diagnosis of certain kind may not have access to discourse(s) that would view him/her as “normal kind” in a classroom setting, because his/her actions, performance, traits, or mere labels contradict the normative ideal – unless of course, classroom practices employ such discourse(s) that embrace affinity and acceptance of all, therefore reconstructing the prevailing norm. Thus, the uncritical employment and reproduction of discourses of certain kind both segregate “disordered self” from “valued self” and “other” from “norm.”

To conclude, as long as the identification of educational need is foregrounded in the differentiation of particular student characteristics, skills, capacities, and weaknesses, the very practice claimed inclusion goes against the foundational values of inclusive education which focused on embracing diversity and denaturalizing “normality” (Graham & Slee, 2008; Tait, 2010). The question those practicing inclusion ought to ask in light of this becomes: what are the types of identities – that is being recognized as a certain “kind of” person in authentic interactional and contextual situations (Gee, 2000–2001) – made available to thos...

Table of contents

• Cover
• Title Page
• Section I Personal and Family Perspectives on Inclusion: Navigating Identity, Opportunity, and Belonging
• Section II Fostering Collaborative Partnerships for Inclusion: Frameworks and Strategies
• Conclusion
• About the Authors
• Index