Book Review

SM Journal of
Neurology and
Neuroscience

First Person Accounts of Cerebral Palsy;
Adding Phenomenological to Medical andSocial Models of Chronic Conditions
Jonathan Cole1*, Minae Inahara2 and Michael Peckitt3
University of Bournemouth and Poole Hospital, UK
Kobe University, Japan
3Department of Philosophy, Osaka University, Japan

1
2

Article Information

Abstract

Received date: Sep 17, 2017
Accepted date: Dec 06, 2017
Published date: Dec 13, 2017

This paper considers the experiences of two of its authors who each live with a form congenital cerebral
palsy and are also philosophers. They describe how their conditions require a first person narrative for fullunderstanding and that the techniques they have developed to ameliorate their impairments are also personaland so not conventional medical interventions. We suggest that, while medical models of impairment and social
models of disability are useful, a third phenomenological - model is also required, which allows an understandingof each person’s subjective experience as well as their needs in relation to their condition. This may be particularly
important for people with chronic conditions.

*Corresponding author
Jonathan Cole, Department of Clinical
Neurophysiology, University ofBournemouth and Poole Hospital, UK,
Email: jonathan.cole@poole.nhs.uk
Distributed under Creative Commons
CC-BY 4.0

Introduction
Imagine you are engaged in some activity, reading in the back garden, when next door’s dog isbarking continually, preventing you becoming lost in the prose. Cerebral Palsy (CP) is somewhat like
that, with uncontrollable forces constantly preventing you from becoming fully engaged in whatever
you do, whether walking, writing, or making love and since CP is congenital, someone with CP will
have known no other way of experiencing the world except as it being disrupted, constantly andunpredictable. Cerebral Palsy is not only a physiological and neurological dysfunction, but also a
way of experiencing the world and, because of the consequences for interpersonal relatedness; it
fosters a form of psychosocial stigma as well. It is defined as ‘Cerebral Palsy is ‘a persistent but notunchanging disorder of movement and posture due to dysfunction of brain, excepting that caused
by progressive disease, present before its growth and development are completed. Many otherclinical signs may be present [1]. We shall explore the lived world of CP where the body, the social,
and the emotional coalesce. Our hope is to explore the differences between the general assumptions
about CP and its subjective experience.
Most of our movements, such as walking, talking and tying shoe laces are skills we learn at an
early age; we do not remember when we learnt, but we are proficient; we just do them Walking isperhaps the most fundamental. Ordinarily we do not think about walking, our body just does it.
But what if the body does not do as you wanted, but seemingly as it wanted, and what if it seemed
to want chaos, from birth, so you knew no other situation? This is the case in some with CP; they
have to be aware of their body all the time to move, and even to try to stay still. Their everyday life isdominated by a disruption of intention into action, agency, which most of us never even consider.
Disruption of one’s own movement by one’s own brain, whilst not the essence of CP is one of its
major characteristics. In order to demonstrate this, we shall explore the experiences of two people.
Firstly, some narrative fragments from a person whose CP has led to left sided hemiplegia. He issemi-paralyzed down his left side with poor control of volitional movement. All he can do reliably
is, essentially, to ‘grab and release’ with his left hand in a fashion, and to walk with the help of awalking stick. Secondly, we give some observations of a person with athetoid CP; she has trouble
holding herself in an upright and steady position to sit, and often shows involuntary movements, inparticular when she speaks. Those with Athetoid CP have problems holding themselves in an erect,
still position for sitting or walking, and invariably show involuntary movements. For some people
with athetoid CP, it takes a lot concentration to get their hand to a particular place (like scratching
their nose or reaching for a cup). Because of their increased muscle tone and problems holding a
position, they may not be able to keep a grasp on objects (such as a cup, a glass, or a pen). For Minae,
it takes a lot of work and concentration to speak.

OPEN ACCESSHow to cite this article Cole J, Inahara M and Peckitt M. First Person Accountsof Cerebral Palsy; Adding Phenomenological to Medical and Social Models ofChronic Conditions. SM J Neurol Neurosci. 2017; 3(3): 1016s1.

SMGr upMichey’s Tale: Questioning Incorporation
Case 1.1: There is no such thing as just going for a walkAs soon as I leave the house I have to alter my position andposture, making tiny alterations every second. Every movement of
my foot, swing of the stick and grip on the stick handle has to becarefully coordinated. With no fluidity to walking, I need constantplanning of every move. I am always aware of my body as an object tobe controlled, not really ‘part of me’, and yet - and at the same time itis certainly ‘my body’ which I need to constantly reorganize.
The world, that is, my surrounding environment, appears as
something hostile, which Iam part of, but certainly not ‘in.’ The world
is an object I continually manipulate, rather than being a friendly
place and some where I feel at ease or at even at home. Within thishostile world, other people appear as obstacles to be avoided, not justbecause I fear bumping into them and hurting myself, and them. Evena hand offering help with shopping bags can appear hostile as it is an
unexpected disruption to my ‘walking plan’. I live in a world which
assails the body and self, and I can only hope that the adjustments willallow me to survive.
To understand the experience of CP, we will employ aphenomenological approach. In part because we feel it a useful way
to consider the lived experience of others, but also because two of theauthors are philosophers, so their own experiences have been informedby their academic discipline. Having said this, phenomenology is, ina sense a method, to describe the lived experience of human beings,
using its own way, rather than a philosophy. Phenomenology seeks
description, which reveals the world as ‘always already there’, to use
Heidegger’s phrase, rather than explanation [2]. As Havi Carel states;‘Phenomenology is a philosophical approach advocating a descriptionof lived experience and consciousness. It focuses on what it is like toexist as humans in a world. It is a simple, descriptive approach that
rejects complex philosophical constructions of reality and puts aside
questions about the nature of this reality. Instead, it focuses on theexperience of an individual, the ways in which we perceive things(phenomena) as they appear to us [3].
Pertinent to this are the notions of ready and present. The readyis the world of available, the useful, the objects which one can use,be it a computer keyboard, piano or chess piece. The ‘present’ refers
to things which are not usable, for whatever reason. For Michey
the world is diminished in the ready and expanded in the present.
However, before examining at this further we wish to return to thewalker.
Michey has to adjust his body constantly, even though he neverknows what adjustments exactly will have to be made or if they
will work. Because he has mobility on one side and not the other,his experience of the world is fractured. One the right side, the sidethat works, there is the world that can be engaged with, what thephenomenologist Martin Heidegger called ‘readiness-to-hand’.
The hammering does not simply have the knowledge about
the hammer’s character as equipment, but it has appropriated thisequipment in a way that could not possibly be more suitable themore we seize hold of it and use it the more primordial does ourrelationship to it become, and the more unwieldy is it encounteredas that which it is - as equipment. The hammering itself uncovers

Copyright  Cole J

the specific ‘manipulability’ of the hammer. The kind of being which
equipment possesses- in which it manifests itself in its own right - wecall readiness-to-hand (BT: 69).
For Michey, objects on the right side are available, they can beused and enjoyed, but on the left side only unusable things exists,
in an environment which one cannot really enjoy but has to benegotiated with great care. Worse still, things on the left assault
Michey, forcing him to constantly adjust his posture, stance andplans; they merely disrupt his ability to get from A to B, things on
the left cannot be usually employed, they are merely things. Michey
experiences his right and left side as if they were two components ofa machine that just did not work together, and their being ‘broken’,
for want of a better term means that he lacks integration with hissurroundings. It is difficult to describe Michey’s agency, it is not justthat his agency is disrupted, or split; his whole relationship with hisleft side is entirely different in character to his relationship with hisright side. When Michey was much younger this need to negotiatewith his left and right side independently of each other created asense of physical bi-polarity, as if Michey had two bodies to deal
with and it affected agency, it could appear at times to Michey as
if he had two selves, one effortless in charge of the right side, theother hopelessly unable to take charge of the left. After thirty-three
years, Michey’s split embodied subjectivity has to some degree been
incorporated, but enough only to make dealing with the world easier;there still is a fundamental disruption and disincorporation between
Michey and his body, self and world. The disabled person’s life is adisturbed assignment. Because of the amount of attention he must
give his body and the world, they feel alien to him. He exists in thephysical world with other people but it appears foreign, he is merely
a guest whilst others are in it and his body is foreign too. He lacks
what Maurice Merleau-Ponty calls ‘Incorporation’; If I want to get
use a stick, I try by touching a few things with it, and eventually, I
have it ‘well in hand’, I can see what things are ‘within reach’ or outof reach of my stick. There is no question here of a quick estimate or
any comparison between the objective length of the stick and the stickand the objective distance away of the goal to be reached. To use to ahat, a car and a stick is to be transplanted into them, or conversely, toincorporate them into the bulk of our body [4].
With this passage Merleau-Ponty started a discourse about skills
and abilities as something which the intentional agent ‘incorporates’
understood best by Drew Leder in his book The Absent Body [5].
Leder reminds us that it ‘literally means to “bring within a body” ’
as related to, although not the same as skill acquisition. Swimming,
tennis, chess playing, these are all skills, they are learnt, throughrepetition and adaptation to the point when they become almost
automatic, done ‘without thinking’. Most people ‘incorporate,’make something such as a backpack or shopping bag ‘part of me’,but for the walker, the disruptive and unpredictable nature of his
CP renders such incorporation impossible. He cannot grasp askill because of his body; there can be no ‘incorporation’, despite
his desire to. Iris Marion Young discussed this inability to acquire
skills as ‘inhibited intentionality [6]. Merleau-Ponty suggests that toevery action a person brings their whole situation; people have not
only a physical and experiencing body, but also have histories andthoughts about the past and future. Whatever a person does, they do
as situated subjects. This works the other way for the walker. After afailed attempt to grasp the cane, the walker may try again, but each

Citation: Cole J, Inahara M and Peckitt M. First Person Accounts of Cerebral Palsy; Adding

Phenomenological to Medical and Social Models of Chronic Conditions. SM J Neurol Neurosci.
2017; 3(3): 1016s1.

Page 2/6

SMGr up
failure reminds him of other times when he failed to complete suchan action. Trying a second time, he may begin the task thinking that
‘I’ can do this, but memories of past failures turn that ‘I can’ into an ‘I
cannot’ and induce him to withhold the necessary bodily orientationto accomplish the task. He fails because the very need to adjust andpredict his involuntary bodily disruptions turn his failure to grasp
the walking stick into a self-fulfilling prophesy. What cannot be overemphasized is the existential nature of inhibited intentionality. The
difficulties the walker faces threatens not only his agency, his ability
to commune with other human beings, but also his very existence.
Walking down the street is about way more than just walking.
Inhibited intentionality shrinks one’s social world.
Case 1.2: ‘Curing’ Michey’s posture
I have to go to the orthotics department almost every month.
Each time a new pair of shoes, with a new style, is suggested. But thesegive me a new gait which does not fit to my body. Each pair makes
my leg move in a way that I do not want my body to move, a way that
seems unnatural to me.
One day, I begged the orthotics specialist to make a pair of shoes
in an old style I could wear without pain. Unfortunately this specialist
said: “You won’t be able to walk very soon if you do not fix yourposture and your way of walking. So I will make a new pair with a
new design for you”. As I listened I realized that the man was talking
about Michey’s future, but not about the Michey who stood in frontof him, the Michey of the present. In addition, the specialist caredabout my posture and my leg movements but not about my walking
and my whole bod. If I do not have a right pair of shoes for me, I
cannot walk and eventually I become socially isolated. I just want to
be in the present!
Whilst trying to help Michey adopt a ‘normal posture’, theorthotics specialist ejects Michey from the world, by making his bodyunheimlich, something which is part of him and yet not part of him.
When he wears his surgically designed shoes, he is no longer a beingin-the-world, no longer part of the world, despite physically existing
in it. He cannot deny that it is his body that uses the shoes, yet it is not
his bodily way of being, not how he expects to experience the world.
The shoes which were meant to enable to lead a ‘normal posture’
have exiled him from his life. Had the orthotics specialist been more
empathetic, he may have known what Michey goes through when hewears the surgically designed shoes and then he might have made apair of shoes which allows Michey to walk. This empathy, however,requires a creative and imaginative step, since Michey’s world isunlikely to have been experienced or even considered by the orthotist.
This requirement for such a process, based on the lived experienceof the person with CP, is one reason we proffer a phenomenologicalapproach.

Minae’s Tale: Questioning Normative Intelligibility
and Fluency
Case 2.1: An able-bodied or able-spoken normative?
When I volunteered to be a guinea pig for clinical practices forfourth year speech and language pathology students in Australia, I
felt uneasy. They wanted me to pronounce each word in the Received
Australian Phonological Standard correctly, but I could not. Worse,when the students looked at the patterns of vowels and consonants

Copyright  Cole J

which I could produce, I found it even more very difficult. Whenthe students asked me to pronounce words which start ‘p’, ‘b’, ‘t’, ‘d’,‘k’, and ‘g’, they found problems with my way of distinguishing ‘p’
and ‘b’. They tried to fix my pronunciation. I found it very difficult
because my first language is Japanese and I have little knowledge ofEnglish phonology. They said that ’p’ was a voiceless stop and that‘pat’ and ‘bat’ sound different. I thought I had pronounced ‘p’ and‘b’ differently, even when, obviously, they could not distinguishmy pronunciations of ‘p’ and ‘b’. When I tried to pronounce themcorrectly, my body froze up and could not speak at all.
Communicating is a big issue for Minae. She moves her facialmuscles into the right position to allow her to speak. She understands
normal pronunciations of English and Japanese languages and knows
she does not pronounce them correctly. It is impossible for her topronounce these words as the students advised because she has somany problems moving her mouth to form words correctly. She also
has problems with processing sound. When she hears backgroundnoise, she cannot focus on listening to people speaking and cannot
speak to them with ease. Trying to improve the movements of her
mouth and tongue, which some have suggested, is not helpful, since
she has developed her own way of communicating and her facialmuscles have adapted to certain ways of use. When students asked her
to say words, to close her mouth, or to stick out her tongue, she foundit difficult, because her whole body froze up because she felt nervous.
Minae might be helped by a social setting where she feels relaxed
and comfortable. However, in reality, society does not work for her
whereas computer technology, in particular the internet, does help.
To help her communicate more effectively, it is less important to fix
her speech than to help with her needs, for alternative technologicaldevices, a quiet space, and other methods of making her feel relaxed.
Minae consider that the e-mail and online chat systems relieve thefrustration of ambiguous communication on both sides.
Case 2.2: There is no such a thing as just giving a speech
When I give a talk at a workshop or a conference, I always feel
uneasy because I not only feel nervous like everyone else, but also
I know I am going to be frustrated at myself. Of course, it might bebecause English is a second language to me, but it is not only that.
When I speak, I have to think of which words I can pronounce easily.
Even if I want to say more complex terms and long sentences, I
cannot. I avoid t words I cannot pronounce and I make my speechvery short, and so shorten my thoughts and ideas. My thoughts andarguments are thus constrained not by knowledge or my creativity
but by the link between me and the vocalization part of my brain.
When I hear noise during my speech, it disrupts my whole self:
I cannot continue speaking at all, since my body shuts down. It is as
if my brain just ordered me to stop speaking and to acquiesce to aforced silence, because my brain assumes that no-one can hear myvoice over the noise. I feel uneasy with people who feel uncomfortableasking me to repeat what I said, and being with those who simply
cannot understand me. Moreover, when I speak, my body moves
involuntarily, jerking back and forth, from left to right. Some people
have assumed that I might be drunk, with my unintelligible speech andinvoluntary movements. Without a signifier - a wheelchair, a walking
stick or a guide dog I have nothing to indicate my impairment.
Similar speech disruptions can be found in personal accountsof stuttering. For example, Dale F Williams’ Stuttering Recovery:

Citation: Cole J, Inahara M and Peckitt M. First Person Accounts of Cerebral Palsy; Adding

Phenomenological to Medical and Social Models of Chronic Conditions. SM J Neurol Neurosci.
2017; 3(3): 1016s1.

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SMGr up
Personal and Empirical Perspectives states; for people who stutter,
however, the disorder is far more than disfluency. It is also anxiety,worry, guilt, shame, self-consciousness, and a host of other auxiliaryfeatures. It is energy spent trying to hide disfluencies, be it via bodily
movement, the rephrasing of utterances, substituting words, or any
number of other behaviors that individuals have employed for thispurpose. In other words, people who stutter deal with not only theirspeech, but also with secondary behaviors, emotions, attitudes, andfears about speaking [7].
As Williams mentions above, these fears are due to others and how
they perceive people who stutter, something Minae also experiences
when speaking in front of people. So before she gives a paper, she
explains her disability and her vocal condition to her audience andasks them to read the subtitles of her speech on the computer screen
using PowerPoint. Though common amongst scientists this remains
unusual in philosophy. Her audience often pays attention to thescreen, and the conference room is usually quiet.
It is, however, not always the case in her day-to-day life. For
example, when she tried to ask for directions to Kings Cross Station in
London, she wrote down on a small piece of paper: “I have a physicaldisability, in particular, speech impairment, and cannot speak toyou. Could you please tell me where Kings Cross Station is?” It wasa small lie since she could speak. However, she felt uneasy speaking
in a public space, such as in busy London, because she assumed thatpeople would be unable to understand what she was saying and sofound it easier to be mute. She also considered how her whole body
would freeze up if her speech was rejected by the listener. When
Minae tried to get attention, most people just ignored her, before
someone stopped and read it. She wondered if, in the UK, she looks
East Asian and so could have been be mistaken for a tourist. She also
wondered if it would have been easier for her if she was recognized asa disabled person, because then people might have treated her betterand not been shocked. She does not want to scare people.
Minae’s bodily disruptions appear first in the lips, tongue, andjaw, and quickly spread to other parts of the face, head and neck andthen the whole body. Pain from contractions of her neck muscles,
over which she has no control, adds to the irregular and jerky
movements which block speech further. Tremor is the first to appear,
and then her body freezes up. It often begins if she thinks her speech
is not intelligible and unacceptable to others, or as she tries to regain
control of her speech and to make the message flowing. In turn, shefeels out of control of her body or, more specifically, out of controlof the ability to speak. Both the jerky movements and the fear of
not-being-understood lead her into the darkness of being mute. In
addition to her primary disruptions of movement and tremor, Minae
also has more complex, secondary, disruptions.
These arise as reactions to the fear of not-being-understood. Minae
can build up fear from the response of her listeners and tries to avoid
unintelligibility, often substituting words that are easier to pronouncefor ones she fears too difficult to say. Sometimes, she avoids talking
altogether. She tries to cover up her condition; for instance a handover the mouth while talking or writing notes. Minae’s fear is people’s
assumption that, like the controversial Sapir-Whorf hypothesis, ourthoughts are determined by our language. American linguists Edward
Sapir and Benjamin Lee Whorf studied the relationship between
language and thought, though neither of them wrote the hypothesis

Copyright  Cole J

bearing their name, nor supported it with empirical evidence and thisarea remains controversial [8,9]. The stronger theory suggests that
language forms the way in which we think and understand the world
and the weaker that language influences our thoughts.
Merleau-Ponty argues that our thoughts lead our speech, andthat speech is a way of articulating our thoughts. He argues that
there is something added on to our thoughts to make our inner ideas
communicable to others; by our adopting a certain linguistic way. For
Merleau-Ponty, the subject is not a ‘speaking’ one but a ‘thinking’one; speech does not merely convey thought, but rather brings aboutor fulfils it. Even so, he does not define thought and language. For
Minae, there are times when she cannot identify certain words until
she has positioned herself in either an English or Japanese linguistic
space, and also there are times when she cannot pronounce certain
words and she needs to think of other words that are easier for her
to pronounce. A frustration is that though her thoughts are notconstrained by language, their communication is.

Towards a Phenomenology of CP
We have explored two people’s physical limitations and theirdisruption between intention and action. In Michey’s case, hisbodily incorporation with in the world is constantly disrupted,
while for Minae people’s reactions to her visible difference and hervoice prevent a normal flow of communication and interpersonal
relatedness. These are two amongst many different experiences of CP.
Why should we explore them? Conventionally, impairment has beenviewed in two ways, the medical and the social models; we want tosuggest that the experiences of both Michey and Minae show the needfor a third, phenomenological model.
The sociologist of disability studies, Mike Oliver, wrote: The wholemedical and rehabilitation enterprise is founded upon an ideology
of normality and this has far reaching implications for rehabilitationand treatment. Its aim is to restore the disabled person to normality,
whatever that may mean [10].
Oliver maintains that the individual or medical model ofdisability considers disability as a personal tragedy for an individual
and that what is required is a means to enable to person to return to‘normal’. Michey and Minae are good examples of Oliver’s criticism
of the ‘medicine and rehabilitation enterprise’. Michey just wants toobtain a pair of shoes to walk; he knows he will never be able to walknormally. Minae just want to communicate to people without calling
attention to herself; she knows her speech will never be normal.
They agree with Oliver that the medical model of impairment, whichperpetuates the idea that individuals are expected to be ‘amended’ or‘normalized’ through some forms of medical intervention, is bothinadequate and wrong when applied to chronic impairment.
In distinction the social model of disability was developed by
Oliver and others; [D] is ability, according to the social model, is all
the things that impose restrictions on disabled people; ranging fromindividual prejudice to institutional discrimination, from inaccessible
public buildings to unusable transport systems, from segregatededucation to excluding work arrangements, and so on. Further, theconsequences of this failure do not simply and randomly fall on
individuals but systematically upon disabled people as a group who
experience this failure as discrimination institutionalized throughout
society.

Citation: Cole J, Inahara M and Peckitt M. First Person Accounts of Cerebral Palsy; Adding

Phenomenological to Medical and Social Models of Chronic Conditions. SM J Neurol Neurosci.
2017; 3(3): 1016s1.

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The social model of disability, as Oliver argues, locates the
responsibility for the problems disabled people face within society,rather than with the individual. The social model suggests that
disability is a form of social oppression by the able-bodied world andhas little to do with the body itself; ironically that is precisely what thesocial model insists, disablement is nothing to do with the body. It is aconsequence of social oppression. But the social model does not deny
impairment is closely related to the physical body. The social model
does not deny that some illnesses have disabling consequences.
Michey and Minae, however, experience bodily restrictions aswell as social oppression and therefore argue that embodiment must
be placed at the heart of disability discourse. In particular, theirawareness of the whole body needs to be recognized as significant
in the study of disability and impairment. One way that the medical
model fails is that it approaches impairment from the perspectiveof a normalized ‘healthy’ commonality. But for many with various
bodily impairments their problems must be understood from theirown perspective, and as problems which cannot be normalized, anapproach we suggest, is a phenomenological one. The individual’s
experience of embodiment (in this case, cerebral palsy) must havea part in any debate about physical disability. Similarly, the social
model often ignores the different experiences and embodiments of
impairment. It does not work for Michey and Minae who cannot
transcend their bodies. Oliver also writes; the problem arises when
doctors try to use their knowledge and skills to treat disability rather
than illness. Disability as a long-term social state is not treatable
medically and is certainly not curable. Hence many disabled people
experience much medical intervention as, at best, inappropriate, andat worst, oppressive. The problem is that doctors are socialized bytheir own training into believing that they are ‘experts’ and accordedthat role by society.
Michey and Minae suggest that medical and social models,
which largely ignore the first-person lived experience of being
disabled, are not true opposites and incomplete. Susan Wendell
writes; the distinction between the biological reality of a disability[or impairment] and the social construction of a disability cannot
be made sharply, because the biological and the social are interactive
in creating disability [11]. They are interactive not only in thatcomplex interactions of social factors and our bodies affect healthand functioning, but also in that social arrangements can make abiological condition more or less relevant to almost any situation.
Hughes and Paterson started connecting phenomenology withsociology. “A phenomenological sociology of the body - what Nick
Crossely calls a ‘carnal sociology of the body’- proposes a paradigm inwhich `the social is embodied and the body is social’”. If we take thisargument/aphorism in relation to impairment and disability, thenit would read that disability is embodied and impairment is social[12]. In Still Lives: Narratives of Spinal Cord Injury, Jonathan Cole
explored the world of those who are living in a wheelchair, without
what he called “the doctor/patient thing” getting in the way [13]. Heinterviewed twelve people with spinal cord injury, including Mike
Oliver, and asked the phenomenological question, ‘What it is liketo live without sensation and movement in the body?’ (And without
continence and sexual function and often in pain). He found no
single or simple answer. The twelve people had a similar impairment
but many different experiences. The narratives move from a simple
view of impairment and disability as an individual tragedy to disclose
the possibilities and richness of life and lived experience available

Copyright  Cole J

to those living with spinal injuries. Like Cole’s journey, we have
explored Michey and Minae’s cases that shows some perspectives on
their relations to their whole bodies. Following Cole, the awarenessof the whole body is required when we explore the creative andimaginative world of people with impairments. Medical discourse
explains that CP is “a persistent but not unchanging disorder ofmovement and posture due to dysfunction of brain…” (Griffiths andClegg).However, medical discourse does not approach what it is liketo be a person with CP and how different each person’s experienceof CP is both Michey and Minae were forced to comply with the
expectations of the able-bodied majority, but they could not exist if
the specific requirements of their bodies were ignored. It is importantto understand that they need medical support, informed by awarenessof their bodies and their lived world.
No two people with CP are ever identical each person’s embodied
experience raises questions about how people with CP see themselvessocially and how much this depends on their own bodily differences,and on their social relations with others. Tetsuya Kono, a Japanesephilosopher who has been working on special education for children
with CP, suggests that Merleau-Ponty’ s phenomenology provides atheoretical framework for exploring the lived experience of people
with CP [14]. He maintains that the treatment of CP needs to see any
behavior as part of a whole structure of embodiment and the person’s
response to others in a social world. We suggest that one requires,in addition to social and medical perspectives, some awareness ofthe first-person lived experience, informed by a phenomenologicalperspective, in this regard.

Concluding Remark
Disruption, whilst not the essence of CP is one of main
characteristics of both spastic and athetoid CP. Each person with
CP is aware of how their body moves and what they can do with
their body in any given situation. We suggest that medical practicemight be improved by awareness of the first-person lived experienceof those with CP. Analyses based solely on the social model or the
medical model and which ignore the individual’s difference ofexperience of CP in experience of the body remain partial. The social
model discounts embodied phenomena and medicine, whilst notignoring individual experiences, is sometimes less sensitive to them,(after all, to ‘manage’ CP one does not necessarily need to know such
experiences in detail). Though full accounts of first person experience
may not always be required, some combination of medicine and social
theories with phenomenologically informed first person approaches
may prove fruitful. If the latter is adopted then able-bodied people
may adjust their views of CP in creative and imaginative ways. As
Oliver Sacks, wrote, ‘The study of disease, for the physician, demands
the study of identity, the inner worlds that patients, under the spurof illness, create. But these worlds cannot be comprehended wholly
from the observation of behavior, from the outside. In addition to theobjective approach of the scientist, we must employ an inter subjective
approach, to see the world with the eyes of the patient himself [15].

Author Involvement
JC invited MI and MP to write about their experiences. The first
person accounts and views on medical, social and phenomenologicalmodels are largely theirs. JC edited and revised the original text. An
earlier version of this paper appeared in UTCP Uehiro Booklet, No.2,
2013, pp.139 - 153, published in Japan.

Citation: Cole J, Inahara M and Peckitt M. First Person Accounts of Cerebral Palsy; Adding

Phenomenological to Medical and Social Models of Chronic Conditions. SM J Neurol Neurosci.
2017; 3(3): 1016s1.

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2. Heidegger, Martin Being, Time, Robinson E & Mcquarrie J Trans, Oxford:
Blackwell. 1962.
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Citation: Cole J, Inahara M and Peckitt M. First Person Accounts of Cerebral Palsy; Adding

Phenomenological to Medical and Social Models of Chronic Conditions. SM J Neurol Neurosci.
2017; 3(3): 1016s1.

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