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

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

CONTACT Weronika Grantham [email protected], [email protected] 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
 AN AUTOETHNOGRAPHY OF COPING WITH SCOLIOSIS 3

forms are “likely to present fuller pictures, ones in which the management of AIS remain disproportionate, scarce and insuffi-
meanings of events and relationships are more likely to be told cient [17,18,35]. In light of this evidence gap, I present my per-
than inferred” [25, p. 391]. sonal narrative.
The autoethnography methodology is still an emerging one
and there are different approaches to conducting this type of
Being subject of AIS screening, diagnosis, and treatment
research. While some researchers focus on the rigour of the
method, others emphasise the value of the narrative and its con- Diagnosis
nection both to the existing literature, and to the wider context When I was 12 years old, I went through a routine school screen-
[26]. In this study, like Wall [26], I use my memories of lived ing programme for scoliosis. I was told that I had this condition,
experience and my headnotes to build my story from a young which was then confirmed by an orthopaedic doctor who diag-
person’s perspective and then connect it to the wider rehabilita- nosed me with adolescent idiopathic scoliosis (AIS). Through this
tive context and my current knowledge. To support this, I also diagnosis, I was made aware that I was impaired by a “faulty pos-
use the techniques of snapshots and artifacts, as suggested by ture” [14]. From feeling healthy and well, I suddenly found out I
Muncey, in order to contextualise the story and enhance the “art had a possibly serious health condition that may cause other
of memory” [22]. 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.
Adolescent idiopathic scoliosis: a brief overview
At that time I was still a happy, active, smart, full of life, child. I
AIS is a lateral spine curvature (of 10 or more in the Cobb classi- recall the screening process, however, as filling my whole being
fication) of an unknown origin that manifests in children older with fear and a sense of embarrassment and shame: my heart is
than 10 years of age [11,12,27]. Scoliosis is categorised according pounding, my eyes wide open. My friends, both girls and boys,
to its cause. The cases of this condition not connected to any and I are told to take our clothes off, allowed only to wear our
other disease or disorder were named “idiopathic”. However, underpants. I remember being cold and shaking, not only
there are also other types of scoliosis, such as congenital scoliosis because of the temperature but also because of fear, uncertainty,
or neuromuscular scoliosis and this condition is often present in and embarrassment of having to be nearly naked with other chil-
people with other disorders, such as neurofibromatosis and in cer- dren and adult-strangers around. Somebody is drawing lines on
tain connective-tissue disorders [11,27]. Thus, it is important here my back. I am told to bend forwards, move here, move there … a
to distinguish between AIS and other types of scoliosis. cold tip touches different places on my back. I feel I am being
AIS is a complex condition that varies in severity, natural his- probed and checked. Nobody reassures me or explains things.
tory, and progression. Mild deformity is defined as a curve of less I felt I did not want to be there, but at the same time I had
than 25 , moderate – between 25 and 45 , and severe – over also a sense of wanting to almost “pass this test”, hoping that
45 Cobb. AIS is more prevalent amongst girls, especially with everything was all right with me, as I was told they were looking
regards to more severe deformities. The female to male ratio for “faults” and “deformations”. It felt very similar to a school test,
ranges from about 1.4:1 for curves of less than 20 Cobb, to 7.2:1 just much more serious and scary because it was a test about me
for curves exceeding 40 Cobb [28]. The mild scoliosis is not pro- and my health. During the examination, I was standing up as
gressive in most cases and therefore, from the perspective of straight as I could, full of tension, hoping this would help me to
some renowned experts, does not require active treatment pass that test. As much as I was putting a lot of effort into “doing
[27,29]. However, in patients with larger curves, the deformity can well” and was “trying hard” during that examination, as if it was a
be progressive and may seriously endanger health (e.g. may lead math test, trying to create a sense of control over the whole situ-
to pulmonary or cardiac complications, as well as may cause psy- ation where I felt powerless, the results came as a big sad surprise
chosocial problems). Consequently, it is monitored and treated, to me and my family. I was told I have “scoliosis”. The term
including bracing and surgical treatment, depending on the sever- sounded strange, scary and very serious to me and my family. It
ity and skeletal maturity [11,12,21,27]. was surprising to us because I had never had any pain, any prob-
Routine screening for scoliosis is a controversial subject, with lems with my back or any functional problems with movement.
mandatory scoliosis school screening programmes in some areas, Quite the opposite, I have always been very active, running
voluntary screening in others, while some organisations and around outside, doing dance, gymnastics, judo … It came as a
experts recommend against it [30,31]. The latest recommenda- shock to me. I did not pass the test (see Figure 2). Even now, after
tions continue to vary from one opposite to another [13,20,21,32] so many years, when I fully immerse myself in that moment in
and the long-lasting discussion of whether to screen or not con- the past, I cannot stop my tears.
tinues [33–35]. The diagnosis started a cascade of medical interventions, wor-
When discussing the procedures of AIS management, the per- ries, uncertainty about the future, and numerous visits to medical
sonal and subjective aspects for young people, as well as their specialists. In the following 2–3 years, I was taken to consultations
potential consequences, cannot be ignored. For instance, one with orthopaedists and general practitioners. Those encounters
aspect of the screening is that it involves young people having to were very unpleasant and difficult for me.
undress down to their underwear in order to perform either the The worst memory I have from that period is during a visit to
Adams Forward Bend Test or another way of visually inspecting a medical university institution, where I was taken by my mother,
the spine and the body (such as the Moir
e topography). who naturally wanted the best treatment and orthopaedic expert-
Treatment interventions, especially bracing and surgery, are also ise for me. Without asking whether it was fine for me or not – I
reported to be associated with psychosocial side effects, such as was told by a doctor, again, to strip nearly naked. I was told to
psychological stress, body image issues, poorer psychosocial func- bend forwards. I felt extremely embarrassed. I was a girl on the
tioning, lower self-esteem, emotional difficulties, activity and par- edge of puberty. I did not want anybody to look at me naked. I
ticipation limitations [17,19,36,37]. Nonetheless, the body of was not a small child anymore and it did matter to me that I was
literature and evidence regarding person-centred aspects of the 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 doubts, and my worries. I was simply left with them all and had
human being; stared at by numerous doctors and medical stu- to cope with them on my own.
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- A person-centred therapist
ing me physically. But the tears kept coming and coming and All of the visits at medical establishments were very difficult and
would not stop. I felt awful. I felt vulnerable, hopeless and not felt very negative for me, except for one encounter. Around 2001,
treated with respect and dignity. I felt I wanted to close myself in at the age of fifteen, I was taken to see a chiropractor. I went in
and disappear. Or just to run away. But I could not. I felt utterly expecting the worst. I was full of fear, waiting for another terrible
powerless and small. I felt like a little animal that cannot say any- and embarrassing experience that again would leave me feeling
thing, cannot speak the same language as the doctors. And even worse about myself and about my body.
if I did, they would not listen. They did not understand my tears. The chiropractor said to me words that, although very simple,
I lost a sense of self-trust and felt powerless. I did not have meant a world to me. He simply said to me: “Hello Weronika”. He
any say surrounding my condition, my needs, my feelings, my smiled, he looked me in the eyes warmly and he shook my hand!
 AN AUTOETHNOGRAPHY OF COPING WITH SCOLIOSIS 5

That had never happened before … I felt a huge sense of that time, a song I’m not a girl, not yet a woman by Britney
relief … and could not quite believe as to what was happening. Spears springs to mind, where she sings:
He was gentle and polite. He spoke directly to and with me, and Feels like I’m caught in the middle
not just talking about my scoliosis, like all the other doctors I met
That’s when I realize
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 I’m not a girl
left the room for a moment, respecting my dignity, so that I was Not yet a woman
more comfortable. He treated me as a person, and not only
All I need is time
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- A moment that is mine
tude. The chiropractor, a little surprised by my tears, acknowl- While I’m in between
edged my feelings in an empathetic way, without judgement.
I’m not a girl

Becoming co-responsible for my own well-being The song came out around 2001–2002, I was fifteen. And that
The chiropractor awakened a sense of trust. He treated me with is exactly how I felt: a time of transition, change, and uncertainty.
respect and ease. He also introduced me to some exercises, which I felt very uncertain especially of my own changing body. My
he asked me to do at home. He did not call them corrective exer- sexuality was slowly awakening, so I did not want anybody to
cises. He attentively performed them with me, allowing me to look at me naked, especially not adults, not grown-up men, being
focus on me staying in a certain position for a while, breathing in this “in-between” state. I did not know who I was just yet. I
and counting the breaths, feeling the breaths and feeling my was transforming, just as was my body. That is why the diagnosis
body, as if to get to know it from the inside out. I then went on and visits to the doctors were so difficult for me at that particular
to do those exercises at home regularly, because of two reasons. time. Reading Linda C. Wisniewski, who wrote a memoir on living
Firstly, I trusted that man and felt he really wanted to help. He with scoliosis, I could relate to each word of hers [38, p. 72]:
offered me hope and positivity and that helped to find motivation I did the bend-over-from-the waist routine again, this time dressed in a
for regular practice. Secondly, the regular practice made me feel hospital gown. I was self-conscious and embarrassed. My breasts were
my body again. The regular practice of the exercises given to me 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
by the chiropractor was like coming back to the body itself. It
bra, only panties under the white hospital gown. One of the doctors
was the beginning of the process of gaining deeper body aware- opened my gown and I bent over again in silence.
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 I had a very similar distressing experience. Additionally, as
the start of the long process of taking responsibility for my own uncertain as I generally was about my body and self, the doctors
health, becoming actively engaged in taking care of myself and also pointed out, that this body of mine was neither normal, nor
making health related decisions: a rehabilitative process of com- perfect. Not “as it should be”, making me feel like a “deficient”
being, which magnified my loss of self-esteem and confidence,
ing back to well-being.
which I had to find ways of dealing with over many years.
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 Discussion
the name suggests, correcting our posture. I did not want to go
As suggested by Neville-Jan [39], personal stories have the power
to that class because it made me feel worse in comparison to my
to bring about changes in society. She views autoethnography as
peers, as only students with scoliosis and other faulty posture
having the potential to connect personal with societal. As such,
issues, were sent to that class. I felt what I know today as stigma- my story presents a voice for discussion amongst healthcare and
tisation and labelling. Moreover, the approach to exercise was rehabilitation practitioners, policymakers, parents, and educators,
very mechanical and did not feel it was benefiting me at all. As a about the patients’ perspective on screening, diagnosis, and treat-
result, I quit soon after. ment of AIS and the need for practical holistic person-centredness
On the contrary, the exercises introduced to me by the chiro- side by side with evidence and clinical expertise in profes-
practor were individually prescribed, focused on the breath and sional practice.
on feeling my body, getting to know it. I could do them calmly at My experiences of scoliosis screening, diagnosis, and treat-
my own home, in my own time, feeling safe and not observed by ment, were mostly distressing and psychologically traumatic.
others, without judgement whether I was doing them correctly or Unfortunately, there are not many other personal accounts in
not. This need for privacy and a feeling of self-consciousness were research about patient and client experiences of scoliosis
really alive for me at that time. I was a teenager, not yet truly [18,19,36]. This is striking since perspectives of patients and clients
secure in my sense of self, including my bodily self. are recognised to be much valued sources of information and evi-
dence, and are better presented in research when looking at
Caught in the middle other health conditions [3,4,40]. However, Wisniewski in her per-
It was during the time in which appearance was generally such a sonal narrative presents her traumatic experiences connected to
crucial and difficult thing for me, as it is for many teenagers. I scoliosis [38], and Linker points to other, similar accounts [36].
was 12 when I was diagnosed; 13 – 14 – 15 – when I went to see The negative experiences encountered in most of the medical
several healthcare practitioners and was sent off to do corrective settings I described in my story, from screening and diagnosis,
exercises. Puberty was a time in life that in itself was very confus- through to seeking expert opinions regarding my health and cor-
ing. My body was changing in a way I could neither control, nor rective exercise treatments, may be considered as examples of a
predict. It felt like an “in-between” time. When thinking back to non-person-centred rehabilitation. During those visits, I
6 W. GRANTHAM ET AL.

experienced a lack of communication between the doctors and treated with respect. To be allowed to wear a top or a bra and
myself and my mother. The focus was on the diagnosis itself not to be nearly naked during the examinations. Or, perhaps, for
rather than myself as a whole person, including my personal the children to be examined one by one, ideally with the pres-
views, values, and preferences. The medical professionals did not ence of a parent or a close person, in a more private setting. I
listen to me and did not inform me about my condition. I was would have wanted to be talked with, explained things, reassured.
just consistently told what to do by them. Those years were emo- I would have wanted to be educated more. Yes, scoliosis can be
tionally upsetting, leaving me with a sense of fear towards the progressive and serious, but it can also be mild and non-progres-
medical profession in general. sive, which I only found out years later.
The chiropractor, on the other hand allowed me to experience Additionally, I remember how the language surrounding scoli-
how a person-centred approach can positively impact the out- osis initially appeared very negative to me as a person and was
comes of care in rehabilitation. Both two-way communication and anxiety-producing as such. Medical terms such as “abnormalities”,
eye-to-eye contact are considered as crucial factors in this mode “deviations” from the norm, “deformities” and “defects” describing
of rehabilitation, they contribute towards the development of a patients’ bodies not to speak of a “faulty posture”, are commonly
trusted and personal relationship between the person and the used, and, for a medical professional, they may be non-evocative
therapist. Such obvious aspects, as basic human contact, had tre- and informative. However, for a young, not medically trained per-
mendous positive consequences for me as a person. I was able to son and her family, it is a biomedical, not common sense lan-
trust the chiropractor and allow the fear that had built up over guage, which might sound terrifying and confusing. Moreover,
years of a non-person-centred rehabilitation, slowly melt away that sort of language not only addresses people’s physicality but
and give way to empowerment and active engagement in coping in my view, might also affect their bodily selves, as it did mine.
with my AIS. Calling for a “correct” posture is calling for a posture that is per-
Moreover, regular meetings with the therapist had helped my fect and unattainable. The screenings evolved from “measuring
involvement in my treatment plan and to maintain a regular prac- unclad bodies with the use of wall charts, graphs, plumb lines, sil-
tice of exercises prescribed by him. I was allowed a voice, which houettes, and, most frequently, photographs” [36, p. 609]. As
empowered me to do something regarding my condition. My Gilman [44] suggests, it was this quest for perfection that played
individual needs were taken into consideration: I was able to do a huge role in connecting posture to the fields of health and
the exercises in the comfort and safety of my own home. I was even morality.
able to do it in my own time and rhythm. My privacy was The choice of words, as well as the impersonal attitude of
assured, I did not feel observed and potentially judged by others, some professionals, should be carefully reconsidered. Mudge et al.
as was the case in a corrective exercise class I was recommended confirm this, suggesting that therapists should work on their com-
to go to at school. All these aspects allowed me to find my own munication skills and implement mindful listening to create a con-
motivation to maintain my regular scoliosis exercise practice. nection between them and their patients [5]. Patients should be
Hence, another positive outcome results from the person-cen- listened to more often because certain things simply cannot be
tred rehabilitation: the adherence to treatment, an issue discussed measured or observed, they can only be “reported by the experi-
in scoliosis research as being crucial and often problematic encer, a conscious human observer” [45, p. 202].
[41,42]. When an individual is given a say in the treatment When communicating as a professional with a patient within a
options available and is both well informed and actively listened rehabilitation context one is faced with a whole person with a
to, with their needs, preferences, and values taken into consider- certain life story. This person cannot be reduced – mathematically
ation, they are given a sense of autonomy to make conscious or otherwise - to a whole as a sum of its parts. The whole regard-
choices regarding their own health. The feeling of powerlessness less if it is a thing or a person is not only more than a sum of its
that often accompanies a medical diagnosis is therefore dimin- parts [46], but from a Gestalt psychological perspective it is some-
ished. It is possible for them to feel more empowered, and active, thing else than its parts. That means we should not try to erase
an equal partner in the whole process, rather than just a passive the distinction between focusing on person-centredness from a
receiver of care. As a result, when one has an opportunity to humanistic point of view or by forgetting the person at all from a
actively participate in the creation of their own rehabilitation naturalistic point of view. Instead of being outplayed as a battle
plan, it is more likely to be put into practice. between two conflicting parties, rehabilitation practice should be
One of the foremost questions I asked myself, was whether my a combination of natural science and human science in which
diagnosis of AIS was necessary. I was wrestling with this question both are essential [47].
for many years. Presently, however, in the light of my autoethno- Natural and human sciences are not playing on the same field,
graphic studies in this subject, I realised I simply cannot answer because they involve two kinds of holism and methodology.
this question. Trying to be a “straight child” is now in the past for Natural science treats all understanding as an epistemological
me. My scoliosis turned out to be mild and not progressive problem, as a question of theoretical knowledge made up of the
(whether this was pure “luck” or whether my lifestyle choices had systematic interrelation of distinguishable elements within, for
also played a role, also cannot be decided). However, this is what example, the ICF framework. This theoretical holism must be dis-
I now know. When I was a young person, the risk of progression tinguished from a practical understanding, which is holistic in an
was real. At that time I did not have a problem with going to the entirely different way by being only meaningful in specific con-
doctors per se. However, I did find distressing the way that the texts and against a background of shared practices [48].
doctors had treated me. Hence, the more significant issue turns That is why it is one-sided to look only at functioning at a
out to be that, it is not simply what the medical practitioners do, given time in the ICF (and the ICF-CY). A practical everyday life
but also how they do it with regards to interactions with their perspective is also needed. If the biopsychosocial perspective is
patients which might be crucial to health care and rehabilitation only construed as a sum of its parts, an aggregate of distinguish-
[43]. It is this vital relationship between the practitioner and able factors within a shared framework of ICF, we are losing a
patient that might be inseparably connected to the positive out- practical understanding of the whole person in clinical, rehabilita-
comes of care. For me personally, I would have wanted to be tive practice – an understanding of how the person concerned is
 AN AUTOETHNOGRAPHY OF COPING WITH SCOLIOSIS 7

coping with activity limitations and participation restrictions in Disclosure statement

their daily life.
The authors report no conflicts of interest.
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 Funding
perspective by using narratives and storytelling. My autoethnogra- There was no external funding for this study. The study was
phy of coping with AIS should not replace a natural science-based undertaken as part of University employment. The University had
exploration of AIS but be considered as an explication of my no role in the study design, data collection and analysis, decision
experiences, a legitimate human science contribution to the prac- to publish, or preparation of the manuscript.
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- References
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