Fierce parenting: an autoethnographic study of disability, inclusion, and ‘othering’

Abstract

This critical autoethnographic article with academic friends explores the complex territory of disability from a strengths-based, inclusive perspective. The article centres on the experiences of a mother and educator (the lead author), who continues to navigate the disability landscape, which is encumbered with deficit views. The curated narratives (or vignettes) presented hereafter, focus on specific educational experiences and challenges related to perceptions of disability and “othering” that threaten to exclude. Each narrative reveals the lead author’s direct experiences of alienation and her need to develop a strong sense of fierceness to protect and secure the right to an equitable, inclusive education for her “othered” child. The authors analyse each story using emic and etic perspectives utilising ideas drawn from Lévinas’ notion of alterity and his ethics of encounter, as well as critical discourse analysis to bring attention to the deficit language. Collectively, the narratives and the analyses aim to bring critical awareness to the lived experiences of this mother and educator and identify the deficit mindsets that affected her so profoundly.

Keywords:

• Disability
• inclusion
• alterity
• deficit views
• fierceness
• critical autoethnography
• strength-based practices
• Lévinas

Introduction

This autoethnographic article embodies a walk through painful memories. As I begin my journey of reflection on the effects of the term “disability” on my life, my initial thoughts seem negative. I feel like I have been transferred to a barren, lonely land, where I am othered (Thomas-Olalde & Velho, 2011). I continue to focus on writing despite such emotions, hoping that my persistent explorations can help weave together the tapestry of “disability” as I have come to know it for many years. Throughout this process, I am learning to embrace moments of stillness that lead me to contemplate and adopt an analytical gaze that enables me to explore the meaning of the label “disability” within my experiential boundaries. In doing so, I am aware of my complex gaze. I am an individual who happens to fall within the “normativity narrative [that] will by definition create the abnormal, the other” (Davis, 1995, p. 42). I find myself within the so-called abled group that form the “hegemony of normalcy” (Davies, 1995, p. 45). Concurrently, as a mother and teacher, I continue to live through and experience the limiting effects of “disability,” whilst I strive to protect the educational rights of my child. The three curated vignettes herein are representative incidents in my lived experience, and illuminate my core beliefs about and understandings of just and inclusive education.

My central focus is to disturb this hegemony. I am deliberately disrupting and purposefully challenging (Leonardo & Broderick, 2011) our common understandings through interrogating and investigating the effects of classifying a person according to their ableness. I invite the reader to consider that the position of a continuoud subscription to such dominant views have “consequences – perceived as real, it has real effect” (Bowker & Star, 1999, p. 319) on the life of individuals and families. I delve into my personal struggles to access equitable inclusive education within the context of the continued persistence of a tradition of exclusion (Best et al., 2018; Slee, 2011). As I write, my reflections interweave, coming from a position of being both parent and educator who firmly believes in the right of every child to access inclusive education. Since becoming the mother of a child with a label, I remain surrounded by professional opinions within educational contexts derived from assumptions that tend to devalue (Knight, 2013).

This study is situated in Victoria, Australia. Several years preceding the events depicted in these vignettes, Australia ratified the United Nations Convention on the Rights of People with Disabilities (2006) and the Disability Discrimination legislation was implemented for over thirty years (DDA, 1992). The current Disability Strategy, 2021–2031, envisions a more inclusive society (National Disability Insurance Agency, 2022). In Victoria, the Department of Education emphasizes that it is “delivering an inclusive education agenda” (Department of Education, 2022). A recent interim report for the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (2020) highlights the stark reality for students with disability. The Inquiry into Social Inclusion and Victorians with Disability (2014) acknowledges that considerable progress is still required to achieve fully inclusive participation of all students in our education system. I am reminded of Slee’s warning that “exclusion resides deep in the bones of education” (Slee, 2018, p. 1). This ignited a determination to share my experiences, reflect, interrogate, and forge new ways of conceiving disability.

The interpersonal encounters reported in the following three vignettes take place within my child’s transitional period from primary to secondary school. This important milestone has been widely acknowledged as an exciting but challenging time for students (Jindal-Snape & Foggie, 2008; Pitt et al., 2021). The first two vignettes focus directly on schooling and education, whilst the third presents an incident within the broader community. Collectively, the vignettes reveal a substantial difference between the rhetoric about inclusive education and the reality of practices and language.

The negative attitudes that I have experienced first-hand have affronted my personal beliefs about inclusion, both as an individual and an educator. As I witness overt stigmatization, fear, and reluctance, I find a new personal force: being fierce and challenging the dominant deficit discourses and stereotypical understandings about disability that continue to perpetuate “negative ideas and narratives about disabilities” (Mueller, 2019, p. 277). I want to emphasise instead the rich resources that each person brings to life and school, regardless of labels such as “disability.” As a reflexive educational practitioner who understands the subtleties of how deficit views of disability operate on the ground carried in the language used, I seek opportunities to reflect, explore and embrace practices of strength and positivity.

Two additional voices are evident in the text. They are my academic colleagues, whose writing intertwines with mine as critical friends, to offer further insights into my lived experiences. Both friends identify as abled but have worked with and known many students with disability and so have voice out of those experiences. The term “critical friend” is taken to be inclusive of collaborative writing as co-authors and professional critical engagement in the development of ideas (Fuentealba & Russell, 2016). At times, our rich discussions supported my beliefs about labels of “disability [as] stigmatised, politically marginalised, and economically disadvantaged” (Rivas et al., 2021, p. 192), but my critical friends also challenged me to balance raw emotions and critical engagement. The three voices in the article are represented thus: when the personal subjective is used (I and me), that is the voice of the first author, Ani [real name to be inserted after review]. Speaking as “we” or in third person denotes our consensus. At other times, co-authors speak with their own voice, using the pseudonyms Felix and Kate [real names to be inserted after review]. A complex multivocality permeates the article.

Through reflexivity with my critical friends, I have been able to explore the contexts in which deficit language is used. Following in Schalk’s footsteps (2018), we question what may happen when we begin to imagine disability differently. This article, through sharing familiar, dominant narratives, aims to challenge but also strives to expand our outlook, our ways of seeing and being. Therefore, we choose to begin by addressing the word disability itself. Scholars present common variations in the use of the term “disability,” such as “dis/ability” where the presence of the slash “/” denotes a binary that “asks us to consider how we value the human and what kind of society are worth fighting for” (Goodley & Runswick-Cole, 2016, p. 3). There is also “(Dis) ability” (McRuer, 2006; Price, 2015) which reinforces difference. From this point on, I posit an alternative as a way of expanding conceptual boundaries. I propose “dis-ability,” hyphenated with the use of M-dash, instead of the more common “/” slash. I choose the longer M-dash to connect the words holistically, but also to create a physical distance that gives pause to the reader, to bring emphasis whilst allowing critical engagement with the prefix “dis” that undermines the pedagogical potential of the noun “ability.” My aim is not to trivialize the issue and the genuine challenges for individuals, parents, families, school communities; rather, I strive to explore new ways to think about dis-ability, including ones based on strength, on recognising individual abilities, and on celebrating differences.

Ethics, alterity, transcendence and Lévinas

Our writing inhabits an ethical space constituted in the relational, central to inclusive practices. In seeking a theorist who spoke to the dynamics of a relational ethic evident in the vignettes, we turned to Emmanuel Lévinas. Core to his work is the notion of radical concern for the other built on alterity, the sense of distinction between oneself and another. In his seminal work, Totality and Infinity (1979) alterity is assembled on the values of respect and responsibility for the other. These values apply both to the otherness of bodies and to subjectivities as they exist in specific sites. This respect is mediated through body (facial expressions, voice, gesture, movement, and spatial orientation) and text (language, positionality of speaking, and textual representation). Of concern in Lévinas’ ethics of being human is a state of being with and for the other.

For Lévinas (1979), alterity emerges through recognition of the face (the seeing of an embodied state), constituting his notion of deep intersubjectivity and intercorporeality. This sense of grounded practicality based on perception of the face of the other can be used to examine notions of dis-ability. Lévinas’ ethics is one of duty to protect and embrace alterity. His writing is imbued with a thoroughgoing sense of equity that suffuses all interactions between oneself and another. Lévinas writes of the encounter: a face-to-face coming together, where each human becomes a unique being. In abandoning the label of sameness, a profound ethics of responsibility is established. This encounter is “primordially enacted as conversation” (Lévinas, 1979, p. 39). The joyful and respectful seeking of the other in interlocution, challenges discourses of sameness, dehumanization, and categorisation that often characterize disempowering labels and deficit discourses (DeShong, 2008).

Lévinas’ theory of encounter and recognition of alterity has considerable import for ethical awareness in education and in the disposition of dis-ability and inclusion. Though we may seek the other, we can never possess the transcendent other; the other is not under our power, thus challenging the hegemony of sameness and any tendency towards being custodial.

Language and the Power of Words

While Lévinas’ perspective about ethics is critical for this study, and while he does acknowledge the significance of language in human encounters, we nevertheless realised that a second theoretical lens was needed to appreciate the power of language to construct notions of dis-ability, inclusion, and deficit thinking. The vignettes are predicated on how language (text and talk) is used to convey attitudes and to position individuals within educational and social settings. We thus turned to critical discourse analysis (CDA) (Mullet, 2018) which critically investigates how language is used to position ideas, groups, and individuals within a sociocultural context (Fairclough, 1989). CDA is also useful for understanding how language is used to empower and to create identities as people operate in different settings (Gee, 2014). Typically, CDA is oriented to the following concerns:

• Positionality and status out of which people speak implying levels of authority and influence;

• Use of different texts (including policy documents) to shape human behaviours, experiences, and actions;

• Power in discourse to determine how particular individuals, communities and groups are perceived in the public realm; and

• Critical presentation of issues such as social class, gender, ethnicity, and dis-ability in public discourses.

We conceive CDA as necessary to complement Lévinas’ perspective of alterity. Lévinas provides the philosophical foundation of the thinking articulated in this article, whereas CDA is a specialized tool for understanding the function of language in the vignettes.

The lived story through an autoethnographic lens

In critical autoethnography “theory and story share a reciprocal, inter-animating relationship” (Holman Jones, 2016, p. 229), interpreted through “cultural perspectives formed through years of socio-cultural, socio-historical, socio-political, and socio-economic events and circumstances” (Tilley-Lubbs, 2014, p. 268). My critical autoethnography with collegial input seeks to problematize, challenge and resist the cultural and educational perspectives evident in the curated narratives and provide critical engagement that “involves both a material and ethical praxis” (Holman Jones, 2016, p. 229).

Throughout my writing, I have had detailed discussions and shared my work with my child and immediate family. They read the vignettes as well as the article and actively encouraged my writing. Receiving their support, with the condition of withholding private information and discussions, or the exposure of personal details, has given me permission to explore my personal reflections and interpretations with honesty. Any concerns about identifying my child (who is now an adult about to begin university study) were ethically addressed by obtaining a written consent mediated through an independent academic. Moreover, although sharing my vulnerabilities and committing my thoughts to paper can be a scary process (Lilyea, 2022), it is precisely this point that I strive to achieve. I aim to be present, speak from my heart (Bochner & Ellis, 2016) in order make my feelings, experiences and learning visible to my unknown reader (Bossle et al., 2014). Such an approach is not without precedent (Barley, 2020).

In this article we present a complex interweaving of multivocal narratives and critical writing in intersection with theory, and we adopt a postqualitative turn, threading various ways of knowing (Creely et al., 2021; Lather & St. Pierre, 2013). In this complex mix of reflective writing in the vignettes and analyses, we seek to transgress epistemological boundaries with our intentional weaving of emic and etic perspectives that forms multiple helices of entanglement. By choosing this approach, originally developed by Pike (1954), we delve into the stories, share the emotional impact and then move out to review, reflect, revise my/our position. In this, balancing emic and etic stances is vital (Olive, 2014). We recognise the power of the individual story which can recruit and compel attention, lead to reflection, involve us personally, change how we understand, and deepen our interpretation (van Manen, 2015).

Procedurally, first author, Ani, wrote the vignettes, then Kate and Felix constructed responses to which Ani responded. We then engaged in “confabulative conversation” (Johansson, 2016, p. 445) before crafting our shared writing. Throughout the stories, I (Ani) choose to be political, to take a stand and explore the “incongruent relationship” (Garland-Thomson, 2011, p. 592) of being the misfit. Instead of accepting submissively, the negative experiences I encounter, articulate my “political demands” (Oliver, 1984, p. 31). I focus on pushing against the dominant discourses of negativity that surround dis-ability. My stand is within debates about the ethics of care and what counts as disabled (Goodley, 2013).

Vignette one: Welcome to the world of corresponding stories! Did anyone say “rights”?

Suddenly, I am aware of people applauding. I look around and realise that I am back in the hall, at our primary school graduation ceremony. I am eagerly waiting for the announcement of my child’s name who is one of the graduates. Naturally, I share the excitement; my sense of happiness in this magnificent achievement clearly reflected with radiant smiles on our faces. I allow myself to ponder over the countless hurdles that we overcame, the successes and the setbacks fuse through a maze of learning curves that bring us to this point in time. I wait and reflect, images of my child’s relentless passion to learn, the twinkling brightness in the eye mixed with an enthusiastic dedication and a full-hearted laugh each time we acquire a new concept or overcome a challenge flow through my thoughts. The speaker continues announcing the names in succession. I feel delight for having this awesome person in my life, both as a parent and an educator. I join in the celebrations as we begin the eager anticipation for the approaching secondary school experience.

The summer weeks roll by quickly while we prepare for the unfamiliar, exciting and perhaps challenging, start of the school year, which brings a new journey for both of us. As a parent, I feel concerned and protective as I observe my child’s initial, uncertain steps in this new environment. Although the trademark dedication and resilience to build strength and confidence continues to give me hope, the unknown future of how my child’s inclusion will play out leaves me apprehensive. Attempting to minimise the effects of this change, I offer my unreserved support to my child, as well as the school, hoping that this would ease any unforeseen challenges.

Within weeks, feelings of fear and intimidation threaten to eradicate any excitement; a sense of alarm begins to seep through from various individuals. My levels of frustration spiral as I face a bulging list of shortcomings that challenge and replace my attempts to search for opportunities to collaborate. Any initiation on my behalf to point out a strength, a reference to my child’s dedication and passion to learn, seems to be countered instantly by examples of deficit thinking and fear. I become surrounded by phrases that connote negativity such as “afraid,” “lost and absent,” culminating in the most repeated example of my child’s inability to read the school map and timetable, and evidenced ending up in the wrong classroom, twice!

Soon, the issue of the school map and timetable become the central factor that seems to have the power to decide my child’s rights. The suitability of a mainstream, inclusive education is questioned with various alternative, specialist settings flaunt around. Meanwhile, the right to be included feels increasingly diminishing and rapidly dwindling. Conversely, my unyielding persistence to rebut such views that, at least to me, seem to dwell on a totalised negativity. My argument that many children may be going through similar experiences of feeling lost during transition are brutally attacked. Increasingly, I feel that the prevailing perception was that I was representing a mother of a child with “disabilities” who also had a major shortcoming; I was told, openly, that it was “me who is unable to understand.”

Finally, a painful realisation sets in. There was no space for active listening, searching for solutions or strengths. At the time, I felt that I had no choice but to force myself to listen in silence, whilst enduring an internal tempest. I decided to brush away the bruising and belittling views about my child. As I lived through these events and witnessed the attempts to strip away the years of hard work and preparation for this right. I chose silence and reluctant accommodation, simply to give my child time to adjust and grow, hoping for improvement.

During this time of distress, a coincidental meeting with a parent, whose child attended our primary school, led me onto a path of reflection and renewed determination. This accidental meeting and our shared experiences directed our conversation towards our children’s transition experiences. Soon, she asked a confronting question about my child’s progress in transitioning to Year 7. I blurted out a clichéd reply that we were all learning to overcome new challenges, whilst I tried to silence the raw painful memories of difficulties in transition. As I asked the same question about her child, with anticipation of receiving a glowing reply, due to her child’s enrolment in an academically accelerated program, I felt astonished at her reply. I heard phrases like “finding it difficult,” “unable to cope,” “was not even able to read the timetable,” and most importantly, “ended up in different classes many times.” Her words immediately caused a sense of elation, a moment of “Aha! I knew that this happens to others.” I was amazed how identical the experiences were. I felt euphoric and triumphant. This example provided the evidence that this child, academically gifted, celebrated, can also experience similar challenges and needs time to adjust.

Unfortunately, my delight was brief, as I quickly realised that regardless of such parallels, the outcome for each child was far from being similar. While for my child there was an expectation to reconsider the educational pathways and future, this woman confidently articulated that “transitioning is hard” and “my child is learning.” To me, the ironically painful moment arrived when she described the teachers’ acquiescent acceptance of her arguments for allowances and tolerance.

My vexation escalates as I continue to question the conflicting views about the accommodation of one child and not the other. One parent’s needs willingly met, whilst mine justifiably subjected to a barrage of negativity, suggesting the imposition of a “deficit” label on my child, an “othering.” To me this became a clear case of discrimination. It incited a moment of choice that I knew I had to answer, even before the end of my conversation with this parent. My ultimate decision was to reject submission and to push away frustration, to choose fierceness, to challenge and support my child, and continue to defend our rights.

An emic analysis (Ani)

Re-reading my vignette, my goal is to step back and take a closer look. Immediately, I feel the fury, frustration, fear and alienation that was lived and experienced. Later, I decide to acknowledge my subjectivity and emotionality (Ellis et al., 2011). I see that my child’s inability to effectively read timetables will inevitably raise concerns. As an educator, I understand the responsibilities placed on us daily regarding the welfare and safety of each student in our care. Furthermore, the policy rhetoric of the Victorian Department of Education (Department of Education and Training [DET], 2021a) outlines student needs and our obligation to support them during transition. Consequently, schools annually address the unique challenges of transition by developing and implementing programs to welcome their students. Having worked in secondary schools for many years, I have assisted my students who required support and time to adjust.

By contrast, the approach to my child points towards a persistent focus on a “label” of deficit around so-called “disability.” This leads to a miasmic negativity and a lost opportunity to collaborate and foster a student’s desire to learn and build confidence through achievements. Despite the parallel story of another child’s “right” to be afforded time to transition and accommodate change, I had to confront another reality. This suggested the absence of concern for the individual and the undue emphasis on a perception of deficit. Inclusion as a constructive attempt to build from individual strength is ignored (Department of Education and Training, 2012). These events lead me to a resolution to be fierce. I reject acquiescence and the removal of my agency. I decide to act, challenge and move beyond the confines of labels.

An etic analysis (Kate)

I read Ani’s words, a mother poised for fight, anxious and waiting for the negativity – crouched in readiness for attack. When the inevitable occurs, as mother, she is angry and frustrated, but worn by the notion that this is not the first or the last time she has been through this thicket of response and emotion. Ani encounters those who see her child as “other” but do not seek to look beyond and learn from this other. Ani retreats but then encounters another mother whose child is forgiven the transgressions of confusion by patient and understanding teachers. This encounter elates Ani, reassuring her that her experience is like others, unique but the same. Confusion is normalised. Ani subsides but then returns to anger. Why was her child seen as different? Her child can learn. Ani’s anger is fuelled by a sense of injustice that circles like an avenging angel to protect and to admonish those who do not see the person. Ani has also become a label – she is the “difficult” mother who fights.

Vignette two: Welcome to the world of accusations. Did anyone mention professional integrity?

I present the events of this vignette as a mother and as an educator. I continue striving to work closely with teaching colleagues, welfare personnel and support staff to maximise my child’s opportunities for academic progress. I understand how challenging and busy classroom life can be. Over the years, I often shared resources or learning methods that we have implemented at home, hoping their use in a class context would support staff members. I firmly believe that good parent-teacher-school communication is central to achieving beneficial outcomes for everyone.

During the initial weeks of transition, whilst we focused on overcoming the hurdles presented in the previous vignette, one afternoon, quite unexpectedly, I received a call from one of my child’s teachers. This was our first conversation, as I have not met this individual yet. Upon exchanging conventional pleasantries and introductions, it was evident that this teacher had something to say, and I had to be ready to listen. Almost immediately, the topic of conversation shifts to the first research task that my child worked through and submitted a couple of days earlier. I feel surprised for the direct call as I reply that of course I knew the task, since we spent hours working through each stage. I suddenly feel the urge to add that I was feeling very proud of my child’s decision to complete the whole task, instead of the expected simpler, shorter version, and the immense dedication displayed, to accomplish each step of the task. This added need to provide further explanation raises many conflicting questions in my mind as I sense that I am forcing myself to remain calm, I anticipate negativity.

My final comment, brushed away effortlessly, horrifies me. The teacher interrupts abruptly, presenting instead a concern about the homework task and its high quality. The central issue becomes an absolute belief by the teacher that my child presented little knowledge or skills in class to be able to complete such a research task. They add that there is a common consensus among staff that it would be impossible for my child to complete such a task. This fuels further sadness and anger. Ultimately, the existence of such a discrepancy seemed to circle around me, as I faced the subtle accusation of completing and submitting my child’s homework.

Within moments, the teacher’s definitive decision is an absolute rejection of the submitted task without an assessment. The teacher concludes that this communication was solely for notification. Thus, judge and jury delivered the verdict, taking away even an opportunity or a “right” of defence. The call ends hastily, leaving me perplexed, with an overwhelming grief at what I saw as another injustice and a lost opportunity to build and to progress. Once again, I feel exposed and under attack as a mother, and more importantly, as an ethical and hard-working educator, who is simply trying to do her best.

While hours pass and my initial shock begins to subside, the heavy weight of sorrow overwhelms my thoughts. I grieve for the hours of our hard work that we had invested to complete this task. My only way to push back such ideas that hover is to remind myself that taking on the challenge of working through the whole project was my child’s decision. How then could I, as an educator with years of expertise, avoid supporting such determination and enthusiasm?

A reflective walk through each step of the whole process begins. I remember dividing the task into manageable sections, scaffolding each section, and helping with overall structure of the presentation. As I scrutinise each step, I feel certain that I did not do the work. I directed and led the process, but my child had to complete each step, independently, with my supervision. This I tried to explain to the teacher, not concealing anything. Unfortunately, the teacher denied me the opportunity to provide further details, the chance to celebrate such dedication to work hard, and the right to progress and develop confidence in the overall learning process. Moreover, it seems to me that this incident was a personal attack on a professional level. At some point during the teacher’s diatribe, the assignment seemed no longer the central issue. I felt under attack for allegedly doing the work. I felt placed under direct scrutiny by a professional colleague with my professional expertise and judgement questioned.

My opportunity to defend was long gone, replaced by a feeling of being in the “naughty corner,” with an expectation to reflect on my actions and choices. I cannot stop thinking that perhaps the basis of this supposed concern regarding the homework discrepancy stems from a belief in my child’s inability to learn. Any completed homework that might challenge such an assumption about what a person with a “dis-ability” can do may lead to a similar backlash. Once more, I feel that I am at a junction where I could continue allowing the comments and the spears of words to target my identity and choose to submit, or I could be clear and resolute.

An emic analysis (Ani)

My identity as an educator and the mother of a child with a label continues to shift. I grow and change as I seek to understand the significance of events depicted in this vignette. Similar incidents will continue to happen but I am learning to be a truth-maker, to understand what I stand for, to embrace integrity that will lead me to “becoming more real by acknowledging the whole of who I am” (Palmer, 1997, p. 38).

Time does not diminish the feelings of devastation at the attack on my professional and ethical beliefs. As I revisit the battlefield of this vignette, another in a long line of battles, I feel a heavier weight as this unexpected attack came from a person who belonged to the profession that I value and love. I ponder the rejection of my child’s hard work and absorb the silencing of my voice and the dismissal of my agency. Regardless of belonging to the same profession, this teacher and I are on separate journeys. I choose the path that celebrates all students, builds on their strengths and supports their growth.

While the veracity of student work is important, the undue focus on and inflexible rejection of a single piece submitted during the first weeks of a school year based on assumptions, seems unreasonable. I find myself identifying contextual factors that may afford an improved performance at home. I recognise the quiet, calm, and comfortable home environment is different to the unfamiliarity of a new classroom and a new teacher. The teacher did not stop to consider the abilities of my child and to explore ways to build a home-school partnership that supports student growth to through “creating connections between learning at school and learning outside of school” (DET, 2021b).

An etic perspective through CDA (Felix)

This narrative unfolds from the dual points of view of educator and parent. These points of view are quite entangled throughout the text and bring complexity to the representations of identity evident in the writing. Simultaneously in the language, there is the dilemma of a parent defending and negotiating the rights of her child, and a teacher whose professional judgements and knowledge are disputed and apparently divested of agential power. Ani employs language to construct a sense of her outrage as an educator and her fierceness as a parent about the outcomes for her child, together with her emotional vulnerability within a context which she believes is antithetical to her core values and in which there the implication of blame.

In the vignette, Ani reveals her professional beliefs about inclusion, employing a more student-centred approach and building home-school collaborative practices. She fiercely establishes her strength-based beliefs about education, repeatedly reiterating these beliefs from the perspective of parent and teacher. These beliefs become Ani’s benchmark for evaluating the response of her child’s teacher that she deems other than being inclusive, strength-based, and collaborative. She writes about feeling under attack because she defended her child. Feelings of indignation, sadness, and anger are evident in the tonal textures of the language, but there is also determination to stand her ground. This language suggests the emotional complexity for Ani in navigating the territory of being a parent and a professional within a discursive environment and an institutional setting that the writer suggests is perpetuating deficit labels.

In sum, there are three key themes evident in this vignette and in the language choices of the writer. First, the perceived overt and covert othering of her as a professional educator and a parent, together with the seeming acceptance of labels that construct her child’s capacity for learning beyond the classroom bounds. Second, there is an apparent diminution of her agency and implied helplessness in the face of what she characterises as entrenched practices and policies embodied in the approach of the other teacher. Finally, there are complex identity formations for the writer as both teacher and parent, built around her claims of transformational pedagogical beliefs about inclusion and her fierceness of resistance to the apparent destructive effects that exclusionary approaches might have on her child.

Vignette three: The privileged “right” to intrude

During this time, I welcome each weekend, as they bring opportunities to put aside all stresses, concerns, and have some time to pause, recharge, and even reflect. Weekends become my time, a break from the outside world of teachers, concerns, work commitments, it is a time for my family, where we can simply enjoy the company of our children and indulge in our simple familiar routines.

I wake up on a Saturday morning with a heavy heart. The events and discussions of the past few weeks (presented earlier) continue to linger. I decide that we need a break, some family time, and so I take my children to a shopping centre as a welcomed distraction. A couple of hours later, we are a part of the hustle and bustle, walking amongst the crowd, discussing where to go. Unexpectedly, I come across a female acquaintance, an outgoing and confident person, who stops us and starts chatting cheerfully. I have little choice but to oblige and participate in this conversation, despite feeling a little apprehensive. This person knows my child and holds her own personal interpretations of my child’s abilities.

We begin a superficial chat as I try to find a way out. Almost instantly, the pressing question about my child’s transition to secondary school emerges. In response, as I prepare to provide the now well-rehearsed, generic statement of “getting used to the environment,” she turns to a person (a stranger to me) standing beside her and proceeds to describe my child as “special Ed.” I feel horrified as any space to describe the great personality and the strengths and positivity that my child brings to us all, quickly dissipates. I watch this charade in utter disbelief. My child is standing right beside me as she utters these words. I feel a punch to my heart and focus only on distracting my child. As I turn to them, all I want to do is to scream at their faces that my child never was, nor is, “just a special case” but the most amazing person that I know.

I gulp for breath; the blessed end of this conversation finally arrives. With a sinking heart, I watch them walk away, unscathed, without a single concern about the effects of their comments. As for me, I know that I will be disturbed and upset throughout that whole weekend at the right of a passer-by to feel perfectly comfortable to categorize, diminish and label. In my opinion, this casual, overconfident intrusion into my personal life represents a privileged “right” to reduce a person to a label.

An emic analysis (Ani)

This narrative illustrates the cold tone of indifferent categorisation that instantly reduces an individual to a trope. The appellation “special Ed.” imposes a judgement loaded with negative connotations, removing any opportunity to acknowledge the person. I recognize that my anger is a reaction against the imposition of power that this person demonstrated in her use of dismissive language. Her privileged confidence in her own opinion, lack of consideration, certainty of categorisation, and removal of my agentic right to speak as a parent, were careless acts of unthinking intrusion.

My experience with this acquaintance, an outsider with uncaring words, denotes “powerful instruments in the politics of disablement” (Slee, 2004, p. 47). Untouched, this acquaintance moves on, as my internal struggle rages with familiar anger, frustration, and a wish to retaliate. My dismay may seem exaggerated but witnessing the loss of personhood of to a category are grounds for distress. Not only is my child labelled but now I am “mother of special Ed.” We are both categorised.

An etic analysis (Kate)

An unexpected chance encounter on a Saturday morning triggered a world of past struggle, hurt, and outrage. The woman’s intrusive use of language and the man’s unthinking acceptance of the term “special Ed.” leads Ani, the fierce parent, to be shocked and silenced by this unexpected intrusion into her cherished family Saturday. Ani’s civility and good manners stop her from doing what she really wanted to do: scream in their faces. This contributed to the frustration that “ruined the whole day” and threatened to ruin the whole weekend, so it had profound emotional impact.

This encounter also returns Ani to familiar territory. Her child is not special needs, she is, simply amazing. Ani has fought for her child for so long; she may have won the occasional skirmish, but the war never seems to end. There is always another battle to be had. Although, this outrage and the sense of injustice overwhelms Ani, displacing more positive thoughts and feelings, it is the insensitive existence of perceived power over her that angers her the most. Moreover, this anger lets others control her and take precious time and energy to muzzle, leaving her exhausted. Fighting a never-ending war against labelling takes its toll.

An Etic Analysis (Felix)

Lévinas’ ethics is not built on abstracted categories or philosophical reasoning from afar. He knew all too well the power of the category to dehumanise and to diminish a human to a mere label. For him, an ethics is built in the reciprocity of one human with another: in a sacred encounter in which the full humanity of the other is sought and there is joy in the seeking. An ethics is thus relational and engendered in a recognition of difference (the alterity) demanding a seeking to bridge this difference and encounter a person with genuine empathy and interest.

The encounter that is depicted is all about the category (“the special Ed.”) and not about a joyful seeking through the alterity of the other as a “truly amazing” being. The category is used as a marker of identification that ignores the humanity of this child, the possibility of seeing a person, a young life with potential. The narrative suggests the pervasiveness of such markers in shaping how a human is positioned, and the unthinking and dismissive ascribing of the marker is suggested by the words, “They left unscathed, without a single concern about the effects of the comments.” The apparent “lack of concern” by the person reveals that this is not an ethical encounter as Lévinas understands it but an “intrusion” in which the uniqueness of a person is dissolved in the act of applying a category.

Discussion

Despite empowering statements by the World Health Organisation that “disability is a part of the human condition” (WHO, 2011, p. 3) concern persists about the use of the word as a label, reflected in a perpetual need to advocate for respect, non-discrimination, effective participation, and regard for difference and equality (UN Convention on the Rights of Persons with Disabilities, 2007; UN Sustainable Development Goals 2021). The three curated vignettes explore grounded experiences, reflect on the power of difference, and demand new ways of seeing difference. Ani’s experiences point to the persistence of deficit language, reflecting the continuing reality that people with dis—abilities are still viewed as “marginal human beings” (Vehmas, 2004, p. 34).

The vignettes reveal a chasm persisting between the worlds of dis-ability and ability. The stories expose this gap, created through the use of deficit language. For Ani, the chasm provokes the existential necessity to seek different ways of seeing dis-ability and pursue alternative understandings to break assumptions, promote dialogue and ultimately transform lives (Vehmas, 2004).

The meaning of dis-ability

Both as a term and a category, “dis-ability” is “diverse, unclear, and open to interpretation” (Hernández-Saca et al., 2018, p. 288). In this article we have positioned the term in respect to the medical and social models of dis-ability, since they continue to shape policy and practice (Patel & Brown, 2017). The medical model of dis-ability (Siebers, 2008) highlights the incapacity of the individual (Barnes, 2008). The social model of dis-ability recognizes both the impairment(s) that affects an individual, and the societal obstacles and barriers that necessitate the use of the term (Manago et al., 2017; Oliver & Barnes, 2010). We argue that both these models are inadequate because they place limitations on the uniqueness and agency of each person. Students with a dis-ability are as diverse as humanity (Tan et al., 2019). We contend that the focus should be on the person, including the rich personal resources each person brings to any interaction, transcending the limiting categories of dis-ability.

Dis-ability can also be understood as a social relational phenomenon framed in the interactions between those with power (without disability) and those “who are relatively powerless because they have been marked out as problematically different” (Thomas, 2004, p. 23). Adopting a social relational model of dis-ability aligns with the ethical understanding of inclusion presented in this article. Fine distinction can be made between the personal restrictions identified by the individual and the imposed social encumbrances which hinder individuals from achieving their goals (Reindal, 2008).

Using the hyphenated form, “dis-ability” throughout this article, is intended to disrupt casual labelling and problematise the term in line with emerging trends in critical disability studies (Goodley et al., 2019). Recognising the root word, “ability,” impels us to acknowledge and appreciate the range of abilities and strengths of people with a dis-ability. It is imperative to refute the general focus on the negative prefix, “dis,” and become aware of deficit discourses that can ensue from a focus on it in the language of policy and practice.

Embracing strengths and building a new outlook

Despite the critical imperative that inclusive teachers and schools should offer quality education for all students, negative attitudes “remain prevalent despite decades of inclusion policy and practice” (Tan et al., 2019, p. 41). Concurrently, growing research embraces strengths-based approaches with a focus on each person’s strengths and capabilities (Buntrix, 2013). It is essential to embrace a paradigm shift from deficit to strength, whilst recognising challenges. Implementing strength-based approaches can be transformational, affording opportunities to enhance all students’ academic performances (Chakraborti-Ghosh, 2019) and challenge negative perceptions of dis-ability in the wider community.

The empowering “Fierce” parent

The crafted narratives reflect my journey as a mother and an educator. My experiences of motherhood have unfolded in a social and educational world constructed in the language of labels. Stigmatization, as I have encountered it, is the everyday experience for many parents of children with dis-ability (Manago et al., 2017). In addition, my adoption of a strengths-based, person-centred approach is difficult in an educational landscape of intense competition and an obsession with results and data that creates expectations about success (Giroux, 2020).

We consider that the lived experiences embodied in these vignettes reveal deficit views that reduce choices and diminish opportunities for those deemed to have a dis-ability through exclusion and isolation. Nevertheless, Ani continues to defend the right of her child to receive meaningful, challenging, and inclusive education that fosters growth and progress. The right to receive education within inclusive-minded schools is widely reflected in global, national, and local legislation and policy (DET, 2019; UNESCO, 2019). According to policy rhetoric, education has a transformative role in the lives of children of all abilities (Shakespeare, 2018; Slee, 2011,  Royal Commission, 2020).

The discordance between the practice of labelling and the right to full recognition for those with dis-abilities create a complex and difficult road for Ani to navigate with her child. While her emotions and experiences of stigmatization sit uncomfortably with her reflexivity (Corrigan et al., 2006; Goffman, 1974), she still embraces fierceness and rejects the role of passive bystander. Her decision is to resist and be “fierce,” challenging those who stigmatize, be they individuals or institutions. Of course, stigmatisation is not a simple ascribing of a category but a complex process in which certain bodies are centralised and others are marginalised, and this complexity lies beneath the apparent simplicity of the language of othering.

I (Ani), cannot simply overlook the difficulties associated with dis-ability. Instead, I strive to advocate for each unique person and for “positive social identities” (Swain & French, 2000, p. 569) and to reframe the distinctions of difference as manifestations of abilities and strengths. In doing this, I embrace my journey of becoming a fierce parent. The term “fierce parent” has rhetorical significance for me in that I am demanding back or reclaiming my agency as a parent and as an educator and inviting the reader to consider the ways my child and I are positioned. My voice is political in fiercely asserting my right to speak into localised educational practices, policy positions and wider societal discourses. I am resisting attempts to silence me as I challenge long held distinctions between ableism and disablism. I reflect emerging concerns in disability studies about hearing marginalised voices from the disability community and opening conversations about the regaining of agency (Boskovich et al., 2019).

Final thoughts

In this article we privilege the experiences of a woman who is both teacher and fierce parent, and critically explore these experiences in intersection with all of our voices that are intricately woven in the text. We fully acknowledge the limitation of telling just one story as well as the singular focus on the issue of disability when it clearly has intersections with other critical issues. Disability is a complex construct and the recent emphasis in critical disability studies on intersectionality and complexity was considered for inclusion in this article. In the end we opted for a single story and a single focus to open possibilities for depth and profundity that uniquely compel and transform. Our purpose is telling one personal, individual story through crafted vignettes is to embrace alterity, interrogate entrenched ways of seeing and understanding dis-ability in an especially personal way that transcends categories (Gallagher et al., 2014).

The vignettes capture moments in the life of a person affronted by negative attitudes about dis-ability, which are carried by the corrosive power of language. Each moment is a crossroad containing challenges to expectations and aims to offer a counterpoint to the prevailing rhetoric about inclusive education. Through revealing the persistent and disturbing gap between policy and what happens on the ground, we strive to join those voices who choose to expose the reality of exclusion. Thus, the immediacy of the lived experience of Ani, aims to disrupt glib deficit labels that continue to operate in education and beyond, whilst it embraces relations that build on strengths and pave the way to just, inclusive education.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Notes on contributors

Alina Kewanian

Alina Kewanian is a parent, an experienced teacher and doctoral candidate researching disability and inclusionary practices in education. She continues to work closely with diverse student groups including refugees, students with different abilities, and international students. The passion to further develop her inclusive teaching pedagogy and embrace the strengths of all her students lead her research and teaching practice.

Edwin Creely

Dr. Edwin Creely is a lecturer in the Faculty of Education at Monash University. He is a phenomenological and ethnographic researcher who focused on lifelong learning, literacies across the years, wellbeing and inclusive education, creativity and creative practices in many learning contexts. Edwin has published widely in a range of international journals.

Jane Southcott

Dr. Jane Southcott is a Professor, Faculty of Education, Monash University, Australia. As a phenomenologist, Jane researches education, cultural identities and hybridity, and community engagement with the arts focusing on positive ageing. Jane is also an interpretative narrative historian and much of her research is biographical or institutional. She supervises many postgraduate doctoral research students.