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Fierce Parenting An Autoethnographic Study of Disability Inclusion and Othering
Fierce Parenting An Autoethnographic Study of Disability Inclusion and Othering
To cite this article: Alina Kewanian, Edwin Creely & Jane Southcott (06 May 2023): Fierce
parenting: an autoethnographic study of disability, inclusion, and ‘othering’, International
Journal of Qualitative Studies in Education, DOI: 10.1080/09518398.2023.2203118
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.
CONTACT Alina Kewanian alina.kewanian@monash.edu Faculty of Education, Monash University, Clayton, Australia
© 2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group
This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://
creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided
the original work is properly cited, and is not altered, transformed, or built upon in any way. The terms on which this article has been
published allow the posting of the Accepted Manuscript in a repository by the author(s) or with their consent.
2 A. KEWANIAN ET AL.
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 under-
mines 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.
• 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, experi-
ences, 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.
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, artic-
ulate 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 envi-
ronment. 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 oppor-
tunities 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.
6 A. KEWANIAN ET AL.
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 accommo-
dation, 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 expec-
tation 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 allow-
ances and tolerance.
My vexation escalates as I continue to question the conflicting views about the accommo-
dation 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.
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 col-
laborate 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 accom-
modate 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.
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 over-
whelms 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 super-
vision. 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 profes-
sional 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.
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 dif-
ferent 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).
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 posi-
tivity 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 opin-
ion, this casual, overconfident intrusion into my personal life represents a privileged “right” to
reduce a person to a label.
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.
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 pro-
vokes 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).
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 interac-
tions 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 pre-
sented 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 appre-
ciate 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.
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 chal-
lenge 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).
Notes on contributors
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.
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
14 A. KEWANIAN ET AL.
education, creativity and creative practices in many learning contexts. Edwin has published widely in a range of
international journals.
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.
ORCID
Alina Kewanian http://orcid.org/0000-0003-3453-6885
Edwin Creely http://orcid.org/0000-0002-5009-4047
Jane Southcott http://orcid.org/0000-0002-1357-5909
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