Disability and Rehabilitation

ISSN: 0963-8288 (Print) 1464-5165 (Online) Journal homepage: https://www.tandfonline.com/loi/idre20

The end of being a straight child: an

autoethnography of coping with adolescent
idiopathic scoliosis

Weronika Grantham, Ejgil Jespersen & Maciej Płaszewski

To cite this article: Weronika Grantham, Ejgil Jespersen & Maciej Płaszewski (2019): The end of
being a straight child: an autoethnography of coping with adolescent idiopathic scoliosis, Disability
and Rehabilitation, DOI: 10.1080/09638288.2019.1624989

To link to this article: https://doi.org/10.1080/09638288.2019.1624989

Published online: 18 Jun 2019.

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DISABILITY AND REHABILITATION
https://doi.org/10.1080/09638288.2019.1624989

ARTICLE

The end of being a straight child: an autoethnography of coping with adolescent

idiopathic scoliosis
Weronika Granthama, Ejgil Jespersenb and Maciej Płaszewskib
a
Faculty of Physical Education and Sport in Biała Podlaska, Jo
zef Piłsudski University of Physical Education, Warsaw, Poland; bFaculty of Health
Sciences in Biała Podlaska, J
ozef Piłsudski University of Physical Education, Warsaw, Poland

ABSTRACT ARTICLE HISTORY

Purpose: In the field of research on adolescent idiopathic scoliosis, the personal dimension is underval- Received 3 January 2019
ued. Even the most comprehensive and current recommendations focus on biomedical issues and are Revised 16 May 2019
entirely based on quantitative studies. Reports and narratives presenting people’s preferences, values, Accepted 25 May 2019
views, and opinions, especially of those affected by this health condition, are not considered in those
KEYWORDS
reports. This article’s aim is to present personal experiences of scoliosis screening, diagnosis, and treat- Scoliosis; diagnosis;
ment, to contribute to the discussion. treatment; adverse effects;
Methods: This is an evocative narrative autoethnography study, which allows focusing on the personal person-centred care;
story of the author’s experiences of adolescent idiopathic scoliosis management, connecting it to the personal experiences;
rehabilitation context. qualitative research;
Results: Experiences of non-person-centred rehabilitation resulted in stigmatisation, distress, and emo- autoethnography
tional upset, including anxiety and fear. In contrast, person-centred therapeutic relationship involved
more positive outcomes of care, such as becoming an engaged co-responsible and active partner in
rehabilitation.
Conclusions: It is strongly suggested to promote biographical research into the personal experiences of
all aspects of adolescent idiopathic scoliosis, to identify patients’ preferences and values more clearly.
Furthermore, screening, diagnosis and treatment processes should be reviewed in terms of person-
centredness, to ensure they are responsive to young people’s needs in the vulnerable time of puberty.

ä IMPLICATIONS FOR REHABILITATION

 Adolescent idiopathic scoliosis, including the treatment, and even the diagnosis, may be stigmatising
and may lead to emotional and psychosocial harms
 Adolescent idiopathic scoliosis screening, diagnosis and treatment processes need to be person-cen-
tred, recognising young people’s needs for privacy and support in the vulnerable time of puberty
 Emotional support from therapists ought to be part of the professional relationship based upon
being with another person
 An explication of experiences of living with adolescent idiopathic scoliosis should be considered as a
legitimate contribution to the practical and scientific understanding of this health condition

Introduction subject of much discussion in rehabilitation. Should the person

When I was 12 years old, I attended a routine school screening
programme and was diagnosed with adolescent idiopathic scoli-
osis (AIS). I was not a “straight child” any longer. It was a shocking
experience at the dawn of my puberty. Although it turned out
that it was not a serious and progressive form of scoliosis, the
diagnosis and rehabilitative treatment impacted my personal
development and identity tremendously. Where is the child’s per-
spective in the management of AIS?
Evidence-Based Practice (EBP) is not just about scientific evi-
dence but should also take clinical expertise and patient/client
values and preferences into account to guide health care deci-
sions [1]. The imbalance in the implementation of these three
principles, especially the underrepresentation of patients’ values
and more broadly – human rights, has gained much attention in
the discourse of the evolution and ethics of EBP and patient care
[2–4]. The role of the person in question is, correspondingly, a
come to the fore in EBP in terms of the application of principles
of person-centred practice [5] or humanitarian principles [2,3], and
additionally, by personalising the professional clinician-patient
relationship [4]? Or would it be better to just focus on the
respective role of the medical and non-medical aspects of
rehabilitation [6,7] and the utilitarian functions of EBP [2,3]?
Likewise, personal factors (PF) in the ICF (International
Classification of Functioning, Disability and Health) are a con-
tested issue. They are not (yet) subject to classification like the
other components in the biopsychosocial framework: body func-
tions and structures, activities and participation, environmental
factors. Geyh et al. [8] argued that developing PF within the ICF is
the way forward for implementing person-centredness and
strengthening the rights of people with disabilities. M€ uller and
Geyh [9] also suggested how to proceed in developing future
classification initiatives in relation to PF.

CONTACT Weronika Grantham weronika.grantham@gmail.com, weronika.grantham@awf-bp.edu.pl Akademicka 2, 21-500 Biała Podlaska, Warsaw, Poland
ß 2019 Informa UK Limited, trading as Taylor & Francis Group
2 W. GRANTHAM ET AL.

The Functioning and Disability Reference Group (FDRG)

attached to the WHO Family of International Classifications (WHO-
FIC) network is, in contrast, interpreting the UN Convention of the
Rights of Persons with Disabilities as favouring a right to privacy.
Therefore, it should not be about producing a taxonomy and clas-
sifying personal characteristics. In situations where PF are
assigned a negative value, there is a risk of blaming the victim.
Presenting the FDRG argumentation, Leonardi et al. refer instead
to look beyond functioning at a given time in the ICF and include
a biographical perspective in understanding disability. Only in this
way a holistic or full-fledged biopsychosocial perspective in the
field of disability and rehabilitation can be brought to life [10].
The subject matter of screening, diagnosis, and treatment of
AIS is in this context a very special case. Between one and three
percent of young people are diagnosed with AIS in countries with
mandatory school-screening for scoliosis. The standard primary
outcome of interest is reducing the progression of the deformity.
Patients are treated to safeguard against potential future health
issues (pulmonary function, back pain and curve progression in
adulthood), however, the primary focus is aesthetics in their pre-
sent [11–13]. Thus, patients’ preferences of a straight standard-
body seem to be in this case seemingly taken for granted, but it
may happen that the patient in question does not share clinical
experts’ prejudice of a presumably correct body [14]. As reported
by Ponseti, the word “orthopaedia” was coined by Professor of
Medicine, Nicolas Andry in 1741, in his book Orthopaedia: or, The
Art of Correcting and Preventing Deformities in Children [15]. He
formed the word from two Greek words: nqho1 (orthos) –
“straight and free from deformity” and P
aίdom (paidios) – “child”,
which together translate to straight child [16, p. 59]. Andry writes:
“out of these two words I have compounded that of Orthopaedia
to express in one term the design I propose which is to teach the
different methods of preventing and correcting the deformities of
children” [16, p. 59]. The picture of a curved tree attached to a
pole with ropes [15], became the symbol of the field of ortho- Figure 1. Tree of Andry – presently a symbol of orthopaedic surgery and treat-
ment. Original source of the image is: Nicolas Andry (engraver unknown),
paedic surgery. This can be seen in Figure 1. “L’Orthopedie”1741 [15]. Immediate source is: Nicolas Andry, “Orthopaedia, or
There is, however, not much knowledge of how it feels to be the Art of Correcting and Preventing Deformities in Children”, vol. 1, 1743, opp.
the subject of screening, diagnosing and treatment of AIS. If 211. Downloaded from: https://commons.wikimedia.org/wiki/File:Andry_tree.png.
addressed, the person ends up aggregated into personal factors
within quantitative studies of disability, quality of life and psycho- Autoethnography starts with personal life and focuses on feel-
social issues around AIS [11–13,17]. Still little is published about ings, emotions, thoughts, as well as physicality, in order to try to
the experiences of young people diagnosed with AIS [18,19] and understand one’s personal experience and connect it to the cul-
the personal dimension of it appears to be lacking [20,21]. A hol- tural context [23]. Hence, this is the most appropriate method-
istic or full-fledged biopsychosocial perspective is, therefore, ology choice to present the research problem of my personal
much needed. scoliosis experiences in the wider perspective.
In this paper, I – the principal author – present my personal More specifically, I chose the evocative narrative autoethnogra-
story of experiencing AIS school screening, diagnosing and treat- phy strategy, in which the researcher makes herself the central
ments, from a child’s perspective, and connect it to the rehabilita- focus of the study and the approach to writing is resembling a
tion context of this health condition. Young people and their biography. This particular autoethnography method encourages
families should have a say concerning treatment interventions emotional dimension and subjectivity, reminding that humans are
[2–4] and, as of AIS, their bodily values and preferences [13]. By not objects and human communication is amongst subjects [23].
presenting autobiographical experiences of scoliosis rehabilitation, This fits well within the focus of my study, where the relationships
I also want to contribute to the ongoing debate of how to pro- between medical practitioners and myself as a patient in a
mote a biographical perspective in studies of disability and rehabilitative setting are crucial to this discussion.
rehabilitation as requested by Leonardi et al. [10]. My story cannot be universally generalised, which is one of the
main critiques of the autoethnography research method. One of
the remedies to the question of generalisability in a single case
Method
study (which autoethnography is a type of), proposed by Kvale
I chose autoethnography as the most appropriate method to and Brinkmann, is for the researcher to provide rich and thick
focus on the story and its meaning. Therefore, I use first person descriptions in his or her report [24] which I endeavoured in this
narrative when presenting my personal story, in order to fully study. In personal narratives, life stories, and autobiographies
reflect on my experiences [22]. these thick descriptions have vital meaning. This is why those

forms are “likely to present fuller pictures, ones in which the
meanings of events and relationships are more likely to be told
than inferred” [25, p. 391].
The autoethnography methodology is still an emerging one
and there are different approaches to conducting this type of
research. While some researchers focus on the rigour of the
method, others emphasise the value of the narrative and its con-
nection both to the existing literature, and to the wider context
[26]. In this study, like Wall [26], I use my memories of lived
experience and my headnotes to build my story from a young
person’s perspective and then connect it to the wider rehabilita-
tive context and my current knowledge. To support this, I also
use the techniques of snapshots and artifacts, as suggested by
Muncey, in order to contextualise the story and enhance the “art
of memory” [22].
Adolescent idiopathic scoliosis: a brief overview
AIS is a lateral spine curvature (of 10 or more in the Cobb classi-
fication) of an unknown origin that manifests in children older
than 10 years of age [11,12,27]. Scoliosis is categorised according
to its cause. The cases of this condition not connected to any
other disease or disorder were named “idiopathic”. However,
there are also other types of scoliosis, such as congenital scoliosis
or neuromuscular scoliosis and this condition is often present in
people with other disorders, such as neurofibromatosis and in cer-
tain connective-tissue disorders [11,27]. Thus, it is important here
to distinguish between AIS and other types of scoliosis.
AIS is a complex condition that varies in severity, natural his-
tory, and progression. Mild deformity is defined as a curve of less
than 25 , moderate – between 25 and 45 , and severe – over
45 Cobb. AIS is more prevalent amongst girls, especially with
regards to more severe deformities. The female to male ratio
ranges from about 1.4:1 for curves of less than 20 Cobb, to 7.2:1
for curves exceeding 40 Cobb [28]. The mild scoliosis is not pro-
gressive in most cases and therefore, from the perspective of
some renowned experts, does not require active treatment
[27,29]. However, in patients with larger curves, the deformity can
be progressive and may seriously endanger health (e.g. may lead
to pulmonary or cardiac complications, as well as may cause psy-
chosocial problems). Consequently, it is monitored and treated,
including bracing and surgical treatment, depending on the sever-
ity and skeletal maturity [11,12,21,27].
Routine screening for scoliosis is a controversial subject, with
mandatory scoliosis school screening programmes in some areas,
voluntary screening in others, while some organisations and
experts recommend against it [30,31]. The latest recommenda-
tions continue to vary from one opposite to another [13,20,21,32]
and the long-lasting discussion of whether to screen or not con-
tinues [33–35].
When discussing the procedures of AIS management, the per-
sonal and subjective aspects for young people, as well as their
potential consequences, cannot be ignored. For instance, one
aspect of the screening is that it involves young people having to
undress down to their underwear in order to perform either the
Adams Forward Bend Test or another way of visually inspecting
the spine and the body (such as the Moir
e topography).
Treatment interventions, especially bracing and surgery, are also
reported to be associated with psychosocial side effects, such as
psychological stress, body image issues, poorer psychosocial func-
tioning, lower self-esteem, emotional difficulties, activity and par-
ticipation limitations [17,19,36,37]. Nonetheless, the body of
literature and evidence regarding person-centred aspects of the
AN AUTOETHNOGRAPHY OF COPING WITH SCOLIOSIS 3
management of AIS remain disproportionate, scarce and insuffi-
cient [17,18,35]. In light of this evidence gap, I present my per-
sonal narrative.
Being subject of AIS screening, diagnosis, and treatment
Diagnosis
When I was 12 years old, I went through a routine school screen-
ing programme for scoliosis. I was told that I had this condition,
which was then confirmed by an orthopaedic doctor who diag-
nosed me with adolescent idiopathic scoliosis (AIS). Through this
diagnosis, I was made aware that I was impaired by a “faulty pos-
ture” [14]. From feeling healthy and well, I suddenly found out I
had a possibly serious health condition that may cause other
health issues in the future, such as breathing or heart problems.
The diagnosis impacted my life tremendously, affecting me both
psychologically and my bodily experience of self.
At that time I was still a happy, active, smart, full of life, child. I
recall the screening process, however, as filling my whole being
with fear and a sense of embarrassment and shame: my heart is
pounding, my eyes wide open. My friends, both girls and boys,
and I are told to take our clothes off, allowed only to wear our
underpants. I remember being cold and shaking, not only
because of the temperature but also because of fear, uncertainty,
and embarrassment of having to be nearly naked with other chil-
dren and adult-strangers around. Somebody is drawing lines on
my back. I am told to bend forwards, move here, move there … a
cold tip touches different places on my back. I feel I am being
probed and checked. Nobody reassures me or explains things.
I felt I did not want to be there, but at the same time I had
also a sense of wanting to almost “pass this test”, hoping that
everything was all right with me, as I was told they were looking
for “faults” and “deformations”. It felt very similar to a school test,
just much more serious and scary because it was a test about me
and my health. During the examination, I was standing up as
straight as I could, full of tension, hoping this would help me to
pass that test. As much as I was putting a lot of effort into “doing
well” and was “trying hard” during that examination, as if it was a
math test, trying to create a sense of control over the whole situ-
ation where I felt powerless, the results came as a big sad surprise
to me and my family. I was told I have “scoliosis”. The term
sounded strange, scary and very serious to me and my family. It
was surprising to us because I had never had any pain, any prob-
lems with my back or any functional problems with movement.
Quite the opposite, I have always been very active, running
around outside, doing dance, gymnastics, judo … It came as a
shock to me. I did not pass the test (see Figure 2). Even now, after
so many years, when I fully immerse myself in that moment in
the past, I cannot stop my tears.
The diagnosis started a cascade of medical interventions, wor-
ries, uncertainty about the future, and numerous visits to medical
specialists. In the following 2–3 years, I was taken to consultations
with orthopaedists and general practitioners. Those encounters
were very unpleasant and difficult for me.
The worst memory I have from that period is during a visit to
a medical university institution, where I was taken by my mother,
who naturally wanted the best treatment and orthopaedic expert-
ise for me. Without asking whether it was fine for me or not – I
was told by a doctor, again, to strip nearly naked. I was told to
bend forwards. I felt extremely embarrassed. I was a girl on the
edge of puberty. I did not want anybody to look at me naked. I
was not a small child anymore and it did matter to me that I was
not allowed to wear a top. It felt like I was being poked, probed,
4 W. GRANTHAM ET AL.
Figure 2. Medical record from my spinal examination. Translated from Polish, it contains, amongst others: my diagnosis (“left-sided scoliosis”); “right-sided rib hump –
small”; and a stamp stating “correction advised”.
moved around and talked about as if I was an object and not a
human being; stared at by numerous doctors and medical stu-
dents, mostly grown-up men, as if I was a case study, an
“anomaly” to them. I could not stop my tears. Nothing was hurt-
ing me physically. But the tears kept coming and coming and
would not stop. I felt awful. I felt vulnerable, hopeless and not
treated with respect and dignity. I felt I wanted to close myself in
and disappear. Or just to run away. But I could not. I felt utterly
powerless and small. I felt like a little animal that cannot say any-
thing, cannot speak the same language as the doctors. And even
if I did, they would not listen. They did not understand my tears.
I lost a sense of self-trust and felt powerless. I did not have
any say surrounding my condition, my needs, my feelings, my
doubts, and my worries. I was simply left with them all and had
to cope with them on my own.
A person-centred therapist
All of the visits at medical establishments were very difficult and
felt very negative for me, except for one encounter. Around 2001,
at the age of fifteen, I was taken to see a chiropractor. I went in
expecting the worst. I was full of fear, waiting for another terrible
and embarrassing experience that again would leave me feeling
worse about myself and about my body.
The chiropractor said to me words that, although very simple,
meant a world to me. He simply said to me: “Hello Weronika”. He
smiled, he looked me in the eyes warmly and he shook my hand!

That had never happened before … I felt a huge sense of
relief … and could not quite believe as to what was happening.
He was gentle and polite. He spoke directly to and with me, and
not just talking about my scoliosis, like all the other doctors I met
before. He was addressing me by my name. I had the time and
privacy to get undressed and to lie down on the table when he
left the room for a moment, respecting my dignity, so that I was
more comfortable. He treated me as a person, and not only
focused on looking at my scoliotic back as if it was a thing. That
time I cried as well. But they were the tears of relief and grati-
tude. The chiropractor, a little surprised by my tears, acknowl-
edged my feelings in an empathetic way, without judgement.
Becoming co-responsible for my own well-being
The chiropractor awakened a sense of trust. He treated me with
respect and ease. He also introduced me to some exercises, which
he asked me to do at home. He did not call them corrective exer-
cises. He attentively performed them with me, allowing me to
focus on me staying in a certain position for a while, breathing
and counting the breaths, feeling the breaths and feeling my
body, as if to get to know it from the inside out. I then went on
to do those exercises at home regularly, because of two reasons.
Firstly, I trusted that man and felt he really wanted to help. He
offered me hope and positivity and that helped to find motivation
for regular practice. Secondly, the regular practice made me feel
my body again. The regular practice of the exercises given to me
by the chiropractor was like coming back to the body itself. It
was the beginning of the process of gaining deeper body aware-
ness, getting to know how my body feels, how my back feels and
what I might need to feel better. It felt empowering. And this was
the start of the long process of taking responsibility for my own
health, becoming actively engaged in taking care of myself and
making health related decisions: a rehabilitative process of com-
ing back to well-being.
Before, the corrective exercise class I was sent to after the
diagnosis, focused on automatic actions, a “one fits all” approach.
The exercises were clearly aimed at making us straighter and, as
the name suggests, correcting our posture. I did not want to go
to that class because it made me feel worse in comparison to my
peers, as only students with scoliosis and other faulty posture
issues, were sent to that class. I felt what I know today as stigma-
tisation and labelling. Moreover, the approach to exercise was
very mechanical and did not feel it was benefiting me at all. As a
result, I quit soon after.
On the contrary, the exercises introduced to me by the chiro-
practor were individually prescribed, focused on the breath and
on feeling my body, getting to know it. I could do them calmly at
my own home, in my own time, feeling safe and not observed by
others, without judgement whether I was doing them correctly or
not. This need for privacy and a feeling of self-consciousness were
really alive for me at that time. I was a teenager, not yet truly
secure in my sense of self, including my bodily self.
Caught in the middle
It was during the time in which appearance was generally such a
crucial and difficult thing for me, as it is for many teenagers. I
was 12 when I was diagnosed; 13 – 14 – 15 – when I went to see
several healthcare practitioners and was sent off to do corrective
exercises. Puberty was a time in life that in itself was very confus-
ing. My body was changing in a way I could neither control, nor
predict. It felt like an “in-between” time. When thinking back to
AN AUTOETHNOGRAPHY OF COPING WITH SCOLIOSIS 5
that time, a song I’m not a girl, not yet a woman by Britney
Spears springs to mind, where she sings:
Feels like I’m caught in the middle
That’s when I realize
I’m not a girl
Not yet a woman
All I need is time
A moment that is mine
While I’m in between
I’m not a girl
The song came out around 2001–2002, I was fifteen. And that
is exactly how I felt: a time of transition, change, and uncertainty.
I felt very uncertain especially of my own changing body. My
sexuality was slowly awakening, so I did not want anybody to
look at me naked, especially not adults, not grown-up men, being
in this “in-between” state. I did not know who I was just yet. I
was transforming, just as was my body. That is why the diagnosis
and visits to the doctors were so difficult for me at that particular
time. Reading Linda C. Wisniewski, who wrote a memoir on living
with scoliosis, I could relate to each word of hers [38, p. 72]:
I did the bend-over-from-the waist routine again, this time dressed in a
hospital gown. I was self-conscious and embarrassed. My breasts were
buds on my chest, my body in transition from girl to woman. The
doctor called in another and another, all males, all young. I wore no
bra, only panties under the white hospital gown. One of the doctors
opened my gown and I bent over again in silence.
I had a very similar distressing experience. Additionally, as
uncertain as I generally was about my body and self, the doctors
also pointed out, that this body of mine was neither normal, nor
perfect. Not “as it should be”, making me feel like a “deficient”
being, which magnified my loss of self-esteem and confidence,
which I had to find ways of dealing with over many years.
Discussion
As suggested by Neville-Jan [39], personal stories have the power
to bring about changes in society. She views autoethnography as
having the potential to connect personal with societal. As such,
my story presents a voice for discussion amongst healthcare and
rehabilitation practitioners, policymakers, parents, and educators,
about the patients’ perspective on screening, diagnosis, and treat-
ment of AIS and the need for practical holistic person-centredness
side by side with evidence and clinical expertise in profes-
sional practice.
My experiences of scoliosis screening, diagnosis, and treat-
ment, were mostly distressing and psychologically traumatic.
Unfortunately, there are not many other personal accounts in
research about patient and client experiences of scoliosis
[18,19,36]. This is striking since perspectives of patients and clients
are recognised to be much valued sources of information and evi-
dence, and are better presented in research when looking at
other health conditions [3,4,40]. However, Wisniewski in her per-
sonal narrative presents her traumatic experiences connected to
scoliosis [38], and Linker points to other, similar accounts [36].
The negative experiences encountered in most of the medical
settings I described in my story, from screening and diagnosis,
through to seeking expert opinions regarding my health and cor-
rective exercise treatments, may be considered as examples of a
non-person-centred rehabilitation. During those visits, I
6 W. GRANTHAM ET AL.
experienced a lack of communication between the doctors and
myself and my mother. The focus was on the diagnosis itself
rather than myself as a whole person, including my personal
views, values, and preferences. The medical professionals did not
listen to me and did not inform me about my condition. I was
just consistently told what to do by them. Those years were emo-
tionally upsetting, leaving me with a sense of fear towards the
medical profession in general.
The chiropractor, on the other hand allowed me to experience
how a person-centred approach can positively impact the out-
comes of care in rehabilitation. Both two-way communication and
eye-to-eye contact are considered as crucial factors in this mode
of rehabilitation, they contribute towards the development of a
trusted and personal relationship between the person and the
therapist. Such obvious aspects, as basic human contact, had tre-
mendous positive consequences for me as a person. I was able to
trust the chiropractor and allow the fear that had built up over
years of a non-person-centred rehabilitation, slowly melt away
and give way to empowerment and active engagement in coping
with my AIS.
Moreover, regular meetings with the therapist had helped my
involvement in my treatment plan and to maintain a regular prac-
tice of exercises prescribed by him. I was allowed a voice, which
empowered me to do something regarding my condition. My
individual needs were taken into consideration: I was able to do
the exercises in the comfort and safety of my own home. I was
able to do it in my own time and rhythm. My privacy was
assured, I did not feel observed and potentially judged by others,
as was the case in a corrective exercise class I was recommended
to go to at school. All these aspects allowed me to find my own
motivation to maintain my regular scoliosis exercise practice.
Hence, another positive outcome results from the person-cen-
tred rehabilitation: the adherence to treatment, an issue discussed
in scoliosis research as being crucial and often problematic
[41,42]. When an individual is given a say in the treatment
options available and is both well informed and actively listened
to, with their needs, preferences, and values taken into consider-
ation, they are given a sense of autonomy to make conscious
choices regarding their own health. The feeling of powerlessness
that often accompanies a medical diagnosis is therefore dimin-
ished. It is possible for them to feel more empowered, and active,
an equal partner in the whole process, rather than just a passive
receiver of care. As a result, when one has an opportunity to
actively participate in the creation of their own rehabilitation
plan, it is more likely to be put into practice.
One of the foremost questions I asked myself, was whether my
diagnosis of AIS was necessary. I was wrestling with this question
for many years. Presently, however, in the light of my autoethno-
graphic studies in this subject, I realised I simply cannot answer
this question. Trying to be a “straight child” is now in the past for
me. My scoliosis turned out to be mild and not progressive
(whether this was pure “luck” or whether my lifestyle choices had
also played a role, also cannot be decided). However, this is what
I now know. When I was a young person, the risk of progression
was real. At that time I did not have a problem with going to the
doctors per se. However, I did find distressing the way that the
doctors had treated me. Hence, the more significant issue turns
out to be that, it is not simply what the medical practitioners do,
but also how they do it with regards to interactions with their
patients which might be crucial to health care and rehabilitation
[43]. It is this vital relationship between the practitioner and
patient that might be inseparably connected to the positive out-
comes of care. For me personally, I would have wanted to be
treated with respect. To be allowed to wear a top or a bra and
not to be nearly naked during the examinations. Or, perhaps, for
the children to be examined one by one, ideally with the pres-
ence of a parent or a close person, in a more private setting. I
would have wanted to be talked with, explained things, reassured.
I would have wanted to be educated more. Yes, scoliosis can be
progressive and serious, but it can also be mild and non-progres-
sive, which I only found out years later.
Additionally, I remember how the language surrounding scoli-
osis initially appeared very negative to me as a person and was
anxiety-producing as such. Medical terms such as “abnormalities”,
“deviations” from the norm, “deformities” and “defects” describing
patients’ bodies not to speak of a “faulty posture”, are commonly
used, and, for a medical professional, they may be non-evocative
and informative. However, for a young, not medically trained per-
son and her family, it is a biomedical, not common sense lan-
guage, which might sound terrifying and confusing. Moreover,
that sort of language not only addresses people’s physicality but
in my view, might also affect their bodily selves, as it did mine.
Calling for a “correct” posture is calling for a posture that is per-
fect and unattainable. The screenings evolved from “measuring
unclad bodies with the use of wall charts, graphs, plumb lines, sil-
houettes, and, most frequently, photographs” [36, p. 609]. As
Gilman [44] suggests, it was this quest for perfection that played
a huge role in connecting posture to the fields of health and
even morality.
The choice of words, as well as the impersonal attitude of
some professionals, should be carefully reconsidered. Mudge et al.
confirm this, suggesting that therapists should work on their com-
munication skills and implement mindful listening to create a con-
nection between them and their patients [5]. Patients should be
listened to more often because certain things simply cannot be
measured or observed, they can only be “reported by the experi-
encer, a conscious human observer” [45, p. 202].
When communicating as a professional with a patient within a
rehabilitation context one is faced with a whole person with a
certain life story. This person cannot be reduced – mathematically
or otherwise - to a whole as a sum of its parts. The whole regard-
less if it is a thing or a person is not only more than a sum of its
parts [46], but from a Gestalt psychological perspective it is some-
thing else than its parts. That means we should not try to erase
the distinction between focusing on person-centredness from a
humanistic point of view or by forgetting the person at all from a
naturalistic point of view. Instead of being outplayed as a battle
between two conflicting parties, rehabilitation practice should be
a combination of natural science and human science in which
both are essential [47].
Natural and human sciences are not playing on the same field,
because they involve two kinds of holism and methodology.
Natural science treats all understanding as an epistemological
problem, as a question of theoretical knowledge made up of the
systematic interrelation of distinguishable elements within, for
example, the ICF framework. This theoretical holism must be dis-
tinguished from a practical understanding, which is holistic in an
entirely different way by being only meaningful in specific con-
texts and against a background of shared practices [48].
That is why it is one-sided to look only at functioning at a
given time in the ICF (and the ICF-CY). A practical everyday life
perspective is also needed. If the biopsychosocial perspective is
only construed as a sum of its parts, an aggregate of distinguish-
able factors within a shared framework of ICF, we are losing a
practical understanding of the whole person in clinical, rehabilita-
tive practice – an understanding of how the person concerned is

coping with activity limitations and participation restrictions in
their daily life.
Therefore, as suggested by Leonardi et al., we also need a bio-
graphical perspective [10] to endow a static perspective of func-
tioning with a dynamic, developmental and action-oriented
perspective by using narratives and storytelling. My autoethnogra-
phy of coping with AIS should not replace a natural science-based
exploration of AIS but be considered as an explication of my
experiences, a legitimate human science contribution to the prac-
tical understanding of AIS and as an indispensable part in the
professional practice of rehabilitation. Similar to Stahl [49], I also
suggest that any diagnostic or management tools and techniques,
as important as they are clinically, cannot replace the representa-
tion of the experience of illness.
Conclusions
I have experienced that screening, diagnosis, and treatments for
scoliosis performed in a non-person-centred way, also happening
during the vulnerable time of puberty, might lead to stigmatisa-
tion and psychological distress, including anxiety, fear, loss of
trust towards the medical professionals.
My two concluding recommendations are (1) to encourage
and conduct more research into the personal experience of all
aspects of AIS, to identify patient’s needs and values more clearly
based upon a practical understanding of their life situation and
prospects; and (2) to review the AIS screening, diagnosis and
treatment processes, in order to evaluate whether they are per-
son-centred, to ensure they are respectful to young people and
respond to their needs in the vulnerable time of puberty.
Additionally, I want to stress that the emotional support I
experienced in my treatment was very meaningful for me in my
story and is often something that therapists and medical practi-
tioners might struggle with, as they try to maintain their profes-
sional attitude. In my view, maintaining a personal attitude and
acknowledging emotions without judgement, might aid with this
aspect of person-centred care. Moreover, developing advanced
communication skills and creating a professional relationship
based upon being with another person, rather than simply doing
something to them, might also be of help. It is worth investing in
alternative ways of communicating between healthcare practi-
tioners and their patients, remembering that they are not talking
about faulty and imperfect bodies, but talking with whole per-
sons, including their feelings, emotions, thoughts and physicality
expressions.
Acknowledgements
I wish to thank my both co-authors, for their indispensable help,
expertise, inspiration, and faith in me in the formation of this art-
icle. Professor Ejgil Jespersen contributed to the research concep-
tion, as well as shared his methodological knowledge, scientific
and in-depth understanding of body and ICF issues. Professor
Maciej Płaszewski contributed with the issue of screening, diagno-
sis and treating AIS in terms of Evidence-Based Practice.
Moreover, both assisted in numerous discussions and revisions of
the article. I am the first author of this article and contributed
with my life experiences, literature review and the issues around
subjective experience. I also wish to thank my husband, Rob
Grantham, for all his love and help, acceptance of what is, and an
ongoing support.
AN AUTOETHNOGRAPHY OF COPING WITH SCOLIOSIS 7
Disclosure statement
The authors report no conflicts of interest.
Funding
There was no external funding for this study. The study was
undertaken as part of University employment. The University had
no role in the study design, data collection and analysis, decision
to publish, or preparation of the manuscript.
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