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DISABLED, OR NOT
DISABLED? THAT IS THE
QUESTION…
A Small-Scale Interpretive Study with People with a Non-Apparent
Disability
Julia Nahal Daniels
Dissertation submitted in part requirement for the MA in
Education and Psychology, the University of Sheffield
August 2013
1
Disabled or Not Disabled? That is the Question….
Page:
Abstract
3
Chapter 1:
Introduction
1a. Terminology and Definitions of the thesis
4
1b. Introduction
1c. Positionality
5
6
1d. Aims and Objectives
1e. Structure of the Thesis
7
9
Chapter 2
:
Background and Wider Context
2a. Ideology of Disability
12
2b. Non-apparent Disability
19
2c. Terminology and Linguistic Analysis of Disability
23
Chapter 3
:
Methodology
3a. Paradigm
26
3b. Methodology
26
3c. Methods
28
3d. Techniques
33
3e. Approach
33
Findings and Analysis
36
Analysis Chapter 4:
Individualism and the Medical
Model
4a. Writing oneself as
Really
Disabled
37
4b. ‘Splitting’ the Self
38
4c. Whose Responsibility is it Anyway?
38
Analysis Chapter 5: The Valorisation of Experience
5a. Incorporating impairment as a lived social reality
41
5b. Incorporating Psycho-emotional Dimensions of
Disablement
44
5c. Incorporating Personal Experience – the Fight for
Recognition
47
2
Disabled or Not Disabled? That is the Question….
Page:
Analysis Chapter 6: The Politics of Visibility
6a. Hierarchy of Impairment
50
6b. Not what it says on the tin!
54
6c. Dilemmas of Disclosure
56
6d. Labels and Discrimination
58
Analysis Chapter 7: Disabled, or Not Disabled?
7a. The Onset of Disability
60
7b. Passing
62
7c. Pride
64
Chapter 8: Discussion
8a. Summary
68
8b. Implications of the research for Disability Theory
70
8c. Applications of the Research in Professional and
Policy Contexts
72
8d. Reflections and suggestions for further study
72
References and Bibliography
74
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3
Disabled or Not Disabled? That is the Question….
Abstract
What effect does non-apparent disability have on identity? This study aims to
explore some of the possible answers to this very open question, drawing
attention to the unique struggles we face. The lack of visible cues indicating
impairment can cause considerable social ambiguity, meaning that those
with disabilities that are not immediately apparent to the outside observer
vulnerable to expectations and judgements if they are unable to perform to
societal norms.
My central aim in this thesis is to challenge the conceptual barrier between
normal and abnormal (Clapton & Fitzgerald, 1990), to destabilise hegemonic
practices to enable a more imaginative way of perceiving dis/ability to
encompass its permeable boundaries. My contention is that the very
existence of people with non-apparent disabilities serves to unsettle taken-
for-granted dualisms and assists us to question inflexible categories.
Exploring the tensions I will describe in this thesis will, I hope, stimulate
innovative ways of thinking about disability, disturbing conventional ways of
categorising and prioritising people. Indeed;
The less cluttered our minds are by the imposed conditioning of
conventional standards of judgement regarding disability, the more
flexible we are in responding to both the beauty and challenge of living
with chronic disability.
(Schumm & Stolzfus, 2011:13).
This study aims to highlight some of the dilemmas associated with living in
the in-between world of dis/ability with reference to the relatively scant
literature available on the subject, autoethnography, thematic analysis and
the narratives of four individuals with a non-apparent disability.
4
Disabled or Not Disabled? That is the Question….
CHAPTER 1: INTRODUCTION
1a: Terminology of this Paper
Before beginning my analysis, I feel that it is important to address some of
the terms I will be using throughout this study. I will be using the term, ‘non-
apparent’ disability as oppose to the more commonly used terms, ‘hidden’ or
‘invisible/non-visible’ disabilities. This is because I have serious objections to
both of these terms. Let us begin with ‘hidden’ disabilities. This term implies
that there is a certain deviousness on the part of the person with the
disability, that they have been complicit in purposefully hiding their
impairments – something which is not always
necessarily
true. The notion of
‘passing’, wherein a person, either purposefully or inadvertently passes for a
member of the dominant group, will be discussed in more detail in Chapter 7
as I believe it to be a hugely important issue in identity formation that
warrants attention. This can lead to the breaking apart, almost ‘splitting’ (to
use a Kleinian term) of oneself into acceptable and non-acceptable
components.
‘Invisible’ disabilities is also a problematic term, as many people with
disabilities that are not immediately apparent question the ‘invisibility’ of
their impairments, if only one were paying more attention.
‘Ableism’ has been defined by Campbell (2001) as:
A network of beliefs, processes and practices that produces a particular
kind of self and body (the corporeal standard) that is projected as the
perfect, species-typical and therefore essential and fully human.
Disability is then cast as a diminished state of being human.
(Campbell, 2001:44)
The underlying view is that the able-bodied are the norm, and disabled
people must always strive to approximate the norm, maintaining and
justifying their lower-status. The language we use has been infused with
ableist terms, as shall be examined in Chapter 2b.
5
Disabled or Not Disabled? That is the Question….
I shall be referring only to adults in this paper as this is who I chose to
conduct my interviews with. The views of children and young people are thus
unfortunately not represented within the scope of this study.
Throughout this thesis, I shall generally use the term ‘we’ to refer to disabled
people. This is not because I claim to speak for all people who have a
disability; indeed I cannot, it is not possible or desired. It is not desired
because I want disabled people to respond, to fill in the parts of the picture
that I cannot or do not see. The aim of this thesis is to invite discussions on
what myself and others have found to be a largely unexplored area in
disability studies. I also refer to people without disabilities as non-disabled,
although the dangers of lumping ‘the non-disabled’ into an indistinct,
homogenous group is tantamount to the very process of ‘othering’ that I am
trying to argue against. Nevertheless, I shall continue to do this for fear of
butchering the English language by constantly referring to ‘people without
disabilities’. I hope that the reader will forgive me for this.
1b: Introduction
The oppression of disabled people has long been an object of intense,
formidable and profoundly passionate study, and it is important to recognise
that we have indeed come a long way from the absolute segregation of
people with disabilities. In the UK increased recognition of the struggles
disabled people face when presented with the social barriers to accessing
facilities, for example, has led to a slow improvement in provisions. And yet
we continue to use derogatory language in classifying a whole section of
society:
dis
abled,
im
pairment,
in
valid. This latter term holds infuriating
memories for me, as the possessor of a non-apparent disability; the
insinuation, if you break the term apart into its component parts, is that the
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6
Disabled or Not Disabled? That is the Question….
individual referred to is not a valid person. This in itself has serious
implications for what it means to identify oneself as disabled.
This leads to the crux of my enquiry; my broad research question is about
how
non-apparent
disability affects identity. There have been surprisingly
few studies conducted into this area, but it remains a significant issue. The
lack of visible cues indicating impairment can cause considerable social
ambiguity, meaning that those with disabilities that are not immediately
apparent to the observer vulnerable to expectations and judgements if they
are unable to perform to societal norms. Samuels (2003) expounds on the
subject of visibility – what she refers to as “the politics of visibility and
invisibility” (Samuels, 2003: 234). She cites Schlossberg (2001) and states;
Theories and practices of identity and subject formation in Western
culture are largely structured around the logic of visibility, whether in
the service of science (Victorian physiognomy), psychoanalysis
(Lacan’s mirror stage), or philosophy (Foucault’s reading of the
Panoptican)”, it becomes apparent that the speculative or “invisible”
has generally functioned as the subordinate term in analogical
equations to this date.
(Schlossberg, 2001: 1, cited in Samuels, 2003: 236).
This hegemonic way of understanding the world, of only believing what we
can see and objectively assess, has lead individuals with non-apparent
disabilities to question and be be questioned about their identity and status
as a “real” disabled person (Reeve, 2006). In other words, ‘Disabled, or not
disabled? That is the question…’.. Some of my participants and I are unsure
as to whether or not to classify ourselves as disabled, and often whether we
do or not is highly context dependent. As such, the notion of in/visibility will
feature heavily in the study.
1c: Positionality
It is essential now that I reveal my own positionality as a native
ethnographer; I will as such be drawing upon my own experiences as a
person with a non-apparent disability to strengthen and provide a personal
7
Disabled or Not Disabled? That is the Question….
element to my research. I feel that this is an important feature of the
analysis, as it means that I too will be subject to the potentially intrusive
questions I will be asking of my participants, and thus will hopefully be able
to gain a more empathic understanding of possible reservations to
responding. I became disabled through a road traffic accident, resulting in a
traumatic brain injury. This can have numerous different effects, depending
on the severity and areas of the brain effected (see the website
headway.org.uk
for more information), but it left me with a loss of memory
function, poor coordination, and near complete loss of speech, along with
other ‘medical deficiencies’. I sustained injuries to both clavicles, several ribs
which subsequently punctured my lung, and a broken neck, along with the
traumatic brain injury which left me in a coma for three weeks. Over time, I
managed to recover most of my physical deficits, but am still left with a
paralysed right arm and a paralysed vocal cord due to the injuries sustained
from incubation. I am well aware that this account reads like a medical
history, and this is a conscious act. I will be providing a medical narrative of
each of my participants, with a view to highlighting the fine web of
intricacies and interconnections between the medical history and the actual
lived experiences of the person.
1d: Aims and Objectives of the Research
What affect does non-apparent disability have on identity? The main aim of
the research is to explore some of the possible answers to this very open
question in relation to individuals with a non-apparent disability and to draw
attention to the unique struggles that we face. This study will look at the
ways that disability is traditionally regarded, and whether this has an effect
on to what extent people with non-apparent disabilities identify as having
one. This is a crucial and under-researched topic. The general image of a
disabled person is the one most often depicted on the doors of toilets or
parking spaces – a stick drawing of a person in a wheelchair. However, this
does not adequately represent most disabled people; according to the
8
Disabled or Not Disabled? That is the Question….
Papworth Trust, in 2010 less than 8% of disabled people used wheelchairs
(Xu, 2012: 4). Indeed, it was estimated in 2000 that as many as 40% of
people who identified themselves as disabled had ‘invisible’ impairments
(Matthews & Harrington, 2000). As I implied earlier, people with impairments
that are not readily apparent visually are in a relatively privileged position, in
that they normally retain the right to disclose their disabled status or not.
However, this also leaves them in an ambiguous state with considerable
“internal dissonance” (Samuels, 2003: 239).
We live in an individualistic society, where the binaries of man/woman,
white/non-white, child/adult, able-bodied/disabled are clearly delineated and
digression from ‘normality’ is seen as inherently inferior. This has profound
implications for the identity of people who find aspects of their identity to be
found in both binaries, but belong entirely to neither. This study aims to
highlight some of the dilemmas associated with living in the in-between
world of dis/ability with reference to the relatively scant literature available
on the subject, autoethnography, thematic analysis and the narratives of
four individuals with a non-apparent disability.
Linton (1998) states that,
I am not willing or interested in erasing the line between disabled and
non-disabled people, as long as disabled people are devalued and
discriminated against, and as long as naming the category serves to
call attention to that treatment.
(Linton, 1998:13).
I will argue here that it is the very placing of people into distinct categories
that serves to perpetuate the oppression and marginalisation of certain
groups of people, and identity, rather than being a question of either/or, is
fluid and ever-changing. I do not claim to present a comprehensive account
of views and perspectives across a range of impairments or disabilities;
rather my aim in this dissertation is to present, as accurately as humanly
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9
Disabled or Not Disabled? That is the Question….
possible, five people’s views, perspectives and opinions on their own unique
experiences with non-apparent disability. As C. Wright Mills states in the
closing paragraphs to
The Sociological Imagination
;
Know that many personal troubles cannot be solved merely as
troubles, but must be understood in terms of public issues - and in
terms of the problems of history making. Know that the human
meaning of public issues must be revealed by relating them to
personal troubles - and to the problems of the individual life.
(Mills, 1959:226).
One person’s experience is just as real, just as worth investigating as 100
peoples experiences. Indeed, if that person’s experience is expressed in
relation to the political and social issues of society at large, then that makes
it all the more authentic. This is what I am seeking to achieve with this study.
I hope that this study will go some way into fostering a more tolerant,
accepting society that in which the abilities, knowledge and experience of all
of us can be honoured and developed. My argument is that we do not need
to segregate, dichotomise and classify; rather we need to develop a world
that appreciates, values and cherishes, and captures the complicated nature
of all of our identities.
1e: Structure of the Thesis
I feel that it is important to give a description of the journey of disability, and
I aim to do this with a brief exploration of how we as a society came to view
people with disabilities as ‘other’. As such, Chapter 2
begins with a social
constructionist outline of the ideology of disability, which then goes on to
examine the problems inherent within the main understandings of disability
thus far. I will look at the dualistic thinking which pervades our society and
examine the nature of the words used to describe disability. The final section
of Chapter 2 will be given over to explaining the themes identified by other
theorists investigating the concept of non-apparent disability. Some of the
10
Disabled or Not Disabled? That is the Question….
themes identified in Chapter 2c relate directly to the narratives of my
participants, and I will hence be exploring these themes in greater detail in
my analysis. These themes centre on the experience of having a
non-
apparent
disability, and I will argue throughout this thesis that they differ in
subtle but significant ways from the experience of having an apparent or
visible disability.
Chapter 3 begins with an explanation of the paradigm I have chosen to
conduct this study, as this reflects my ontology and epistemology. Next I will
describe interpretive methodology and attempt to justify my reasons for
using this method as an effective means of presenting valuable and rich
data. I will outline my use of autoethnography, and try to convey the
potential benefits of this as well as the dangers. I have tried to be as
reflexive as I can throughout this thesis and am aware of the perils of making
this piece too subjective and personal, however there is no escape from the
fact that I am
in
this story, and it is a subject which is intensely personal to
me. Following this is an explanation of thematic analysis, which will be how I
aim to analyse the rich, vibrant multifaceted narratives of the participants
who informed this study with their in-depth interviews. Finally, I will invite the
reader to look at the main approaches that I will be using to explicate my
analysis.
Chapter 4 is where I shall begin the thematic analysis of the narratives of my
participants and I. Throughout the analysis sections, I shall use relevant
literature to support and hopefully reify these statements. Most chapters will
be divided into sub-themes: all relate to one central theme. Chapter 4 looks
at the impacts of the medical model and individualism on the self-worth and
self-respect of my participants.
As my participants and I have all been
influenced to some degree by the hegemonic ideologies of our time, this
chapter will begin to probe the ableist assumptions that we are
subconsciously infused with, and begin to question these taken-for-granted
ways of being.
Chapter 5 will begin to explore what I have broadly termed
11
Disabled or Not Disabled? That is the Question….
the problems within the social model, and looks specifically at the need to
include the realities of impairment and a discussion of bodily experiences
into disability studies. Secondly, this chapter probes the psycho-emotional
aspects of disability, and concludes that any meaningful discussion on the
nature of disability must include space for these affects to be explored. The
final section of this chapter looks at the need for validation of personal
experience. The current literature, along with the narratives of my
participants and I highlight the importance of this. The theme of the next
chapter, the issue of visibility, runs concurrently throughout this thesis.
It is true that because our impairments are not always readily visible to the
outside observer, we have the opportunity to ‘pass’ for members of the
dominant group. However, this can also lead to the complex issue of fitting in
to the marginalised group, a theme which will be explored under the title
‘hierarchies of impairment and questions of legitimacy’. The issue of visually
appearing to be something that you claim you are not, can and does lead to
issues of disbelief, which then has a complex and conflicting effect on the
psychological and emotional aspects of selfhood, relating back to the theme
of Chapter 5. This will be discussed under the heading, ‘not what it says on
the tin’. We then move on to the next sub-theme – dilemmas of disclosure. I
will use the narratives of my participants to expound on the feelings
associated with revealing (or not revealing) a disability. The final sub-theme
in this chapter examines labels and discrimination.
We then move on to the final chapter of my analysis, ‘disabled or not
disabled?’ I begin this chapter with the question of whether the onset of
disability has an effect on identity. I then explore the complex issue of
‘passing’. My participants did not make much reference to this notion,
however it is a very personal issue for me and thus warrants inclusion here.
The notion of pride has often been referred to as the flip side of passing, but I
believe this to be too simplistic a view, and I elaborate on this in Chapter 7c.
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12
Disabled or Not Disabled? That is the Question….
Chapter 7 is the end of my analysis, hence Chapter 8 commences with a
review of the main aims of the study and an assessment of whether I have
achieved these with a summary of the findings. In this section, I will attempt
to tease out some of the key findings of the study. However, the intentions of
this thesis are not to provide conclusive, concrete answers to set questions,
but are instead to propose explorations that try to illuminate the existence of
spaces in-between set binaries and to question the need for dualistic
thinking. Chapter 8b will look at the potential implications of the research for
disability theory, and 8c will explore the potential applications of the
research in professional and policy contexts. Finally, Chapter 8d will include
some reflections and suggestions for further study.
13
Disabled or Not Disabled? That is the Question….
CHAPTER 2: BACKGROUND AND WIDER CONTEXT
2a: Ideology of Disability
...People who acquire impairments, whether it be through sudden injury
or accident or the gradual encroachment of chronic illness, are faced
with identity crises or ‘biographical disruptions’ (Bury, 1982) which are
directly linked to the social construction of disability as an inferior
status.
(Galvin, 2003: 149).
My interest here is how we as a society came to view disability as inferior
and how this view was justified. In this chapter, I will endeavor to explore the
hegemonic views of disability.
Ideology has long been a slippery term to define; for the purposes of this
study I will refer to it here as a set of values, beliefs and ways of being in the
world which underpin social practices (Oliver, 1999). Every political or
economic tendency, implicitly or explicitly, entails an ideology. Individualism
as an ideology has served to oppress disabled people, as expounded by
Abberley (1987), Oliver (1990, 1999), Linton (1998) and Wendell (1989).
2a.1 The Rise of Individualism and the Devalorisation of People with
Disabilities
Individualism can be described as the ideology, political philosophy and
social outlook that emphasises the importance of the individual. We need to
be aware that individualism is a framework through which we view the world;
spectacles through which we choose to perceive the environment in which
we live (Bateson, 1972). Individualists value self-reliance and independence,
and promote self-actualisation through opposing external influence on the
gratification of ones' own desires. The self-other boundary is firm, and one is
expected to have a strong sense of personal control. Personal achievement is
valued, and it is widely 'recognised' (believed) amongst Eurocentric and
North American societies that it is the individuals' drive and motivation that
14
Disabled or Not Disabled? That is the Question….
leads
him
(the androcentric individualist view of the ideal person) to
succeed. The 'American Dream' – if you want it enough, and are prepared to
work hard enough to get it, it's yours. Indeed, as Goodley (2011) so aptly
puts it;
The individual has a long socio-political history and etymology. It is tied
to the enlightenment rise of the 'reasoned' individual and his
democracy over the sovereignty of the church and monarchy. The
'individual' is also the creator of an alienating, symbolic order which
masks the inequalities of social and political life.
(Goodley 2011: 142)
The Industrial Revolution in the UK meshed well with the values inherent
in individualism. Individualist culture awards social status to personal
accomplishments such as innovations, important discoveries and the
accruing of personal wealth. The dominant view of the 'individual' as we
come to recognise him now, is autonomous, self-contained and self-
actualising. Autonomous in the sense that he is master of his own destiny;
this was a significant break from the pre-enlightenment period in which
God controlled the destiny of all and one had little power to influence his
own direction in life. Self-contained in that the ideal individual needs no-
one but himself to function adequately, and needs little support from
others. This is one of the reasons why a disabled person is
not
the
idealised individual, as people with a disability are thought to need help
and assistance from others around them, taking that person away from
focusing on their own needs and desires. As Oliver (1999) infers, the
category of ‘disability’ was produced as a result of the rise of
individualistic culture and capitalist forces. He states that, “The economy,
through both the operation of the labour market and the social
organisation of work, plays a key role in producing the category disability
and in determining societal responses to disabled people” (Oliver 1999:
166). Indeed, as Wendell (1989) notes, whether a condition is ‘disabling’
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15
Disabled or Not Disabled? That is the Question….
or not is highly context and time dependent. Factors such as technology,
cultural attitudes towards appearance and pace of life can have
monumental effects on whether or not a person is considered disabled
(Wendell, 1989:109). She goes on to say that because of their perceived
inability to be ‘productive’ members of society, many members of the
public see providing assistance or resources to people with disabilities as
a form of charity. Yet in reality, it is precisely because of this derogatory
perception that many disabled people
are
underemployed
because
they
don’t have access to the support they need and because of the general
attitude that we are somehow
less
than
, in
ferior,
dis
abled. It is a vicious
circle. Individualism encouraged the view of people ultimately as
commodities, and their inherent worth was (is) judged on their ability to
be productive members of the labour force (Oliver, 1990). If people could
not, or would not conform to the ideals of capitalist society, they would be
in danger of being pushed out or ‘othered’ by their communities. “Hence
the oppression that disabled people face is deeply rooted in the economic
and social structures of capitalism” (Oliver, 1999: 168). Abberley (1987)
expounds upon this point, stating that it is because disability affects
potential workers (the primary raison d’etre according to capitalism)
disability becomes a ‘problem’; moreover, as an
individual
problem
requiring individual treatment. Oliver (1990) describes this concept in a
succinct way;
The hegemony that defines disability in capitalist society is constituted
by the organic ideology of individualism, the arbitrary ideologies of
medicalisation underpinning medical intervention and the personal
tragedy theory underpinning much social policy. Incorporated also are
ideologies relating to concepts of normality, able-bodiedness and able-
mindedness.
(Oliver, 1990: 163).
16
Disabled or Not Disabled? That is the Question….
The medical model is often referred to as the individual model, as it concurs
with the ideals affirmed by individualism; the autonomous, independent
person can look inside himself and ‘cure’ any ailments that he has. The
responsibility for successful recovery is placed firmly on the ‘impaired’
person’s shoulders. In some ways this view is helpful as it purports to provide
us with our own agency; however, it has the potential to be increasingly
damaging to individuals with, for example, chronic conditions who cannot
‘make’ themselves better. It has the potential to make people feel like
failures. The basic premise of the individual or medical model is that it is the
individual who needs to make changes to adapt to society, not the other way
round.
2a.2. The Medical Model and its Problems
Under the medical model of disability, individuals are defined by their
impairments. This model justifies the social exclusion of disabled people,
defining them as “less than”,
in
valid,
ab
normal,
a
typical. It seeks to return
people to a state of ‘normality’ by curing or at least managing illness or
disability. Many have argued that the medicalisation of disability and the
terminology of disability as
lack
have served to perpetuate the oppression of
thousands of individuals the world over. The medical model has been
accused by most disability activists as promoting and perpetuating the
stereotype of the disabled individual as being pitiful, disempowered,
unfortunate and in need of charity. Control resides firmly with the
professionals; decisions over housing, benefits, education and employment
are rarely left to the individual.
Wendell (1989) argues that the dominance of the medical profession goes
hand in hand with the strong cultural desire to control the body. Those who
cannot control their bodies are seen as failures.
Goodley and Runswick-Cole
17
Disabled or Not Disabled? That is the Question….
(2011) have also alluded to this, writing about the valorisation of the
“bounded body” (Goodley & Runswick-Cole, 2011).
Cultural and social attitudes towards disability still seem to be perpetuated
by the medical model, although I have struggled to find any theorists who
admit to explicitly adhere to the ideas associated with this. The medical
model focuses only on the things that disabled people
cannot
do. Lang
(1998) cites Brinsenden (1986) as stating:
…Like everybody else, we have a range of things we can and cannot
do, a range of abilities, both mental and physical that are unique to us
as individuals. The only difference between us and other people is that
we are viewed through spectacles that only focus on our inabilities, and
which suffer an automatic blindness - a sort of medicalised social reflex
- regarding our abilities.
(Brisenden, 1986 cited in Lang, 1998:2).
The medical or individual model treats disability as a personal problem,
requiring personal, individual treatment and relies heavily on the expertise of
medical professionals. It requires individuals to make a successful recovery
and adjustment to ‘normality’, whatever that may be. It places the onus of
recovery firmly upon the individual, meaning that if that individual fails to
recover to society’s expectations, they are deemed to be failures in life. As is
already explored by many other writers, this can have catastrophic effects on
the self-esteem and self-worth of people with disabilities. Using a medical
model perspective, recovery from illness can be achieved with the ‘right’
attitude –the implications of which are that all people who are unable to
recover fail to do so because they have the ‘wrong’ attitude.
From this point of view, then, it is no wonder that people with non-apparent
disabilities may try to ‘pass’, particularly if they have acquired the disability
as an adult. As Galvin (2003) identifies;
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Disabled or Not Disabled? That is the Question….
Ablebodiedness (is) an unquestioned, unremarked upon state that only
becomes notable in its absence. To become disabled is to be relegated
to a marginalised status in society and brings into high relief for the
disabled person the advantages accorded those who inhabit the
unacknowledged centre. To become disabled is to lose access to these
privileges and in doing so, begin to be defined in very different ways.
(Galvin, 2010:143)
The Social model was developed in response to the medicalised view of
disability and the resulting damaging effects on the self-esteem and self-
worth of individuals with disabilities. Disability activists and scholars wanted
to move away from this view which can explicitly and implicitly place the
blame for a disabled person’s circumstances on to their shoulders, to a view
which implicates society for the oppression and denigration of people with
impairments. This has ramifications for people with non-apparent disabilities
as the model seeks to elevate the position of disabled people, however it
does this in a way that necessitates a clear binary – disabled/non-disabled,
and thus marginalises individuals whose visible and felt identity is not so
clear.
2a.3 The Social Model
The social model rejects the causal relationship between handicap and
impairment, arguing that it is the social environment which causes
disablement. It rests upon the definitions of impairment and disability as very
different things. As Reiser (2010) identifies;
Through fear, ignorance and prejudice barriers and discriminatory
practices develop which disable us. The understanding of this process
of disablement allows disabled people to feel good about themselves
and empowers us to fight for our human rights.
(Reiser, 2010:13)
19
Disabled or Not Disabled? That is the Question….
The Social Model, put forward by disabled scholars and activists such as
Oliver (1990; 1996) Barton (1996) and Swain et al. (1993) proposed that
disability is caused only by social barriers, thus negating important
influences from personal experiences and real embodiments of impairment.
It maintains that it is not the individual’s impairment that causes disability,
or is the disability itself; rather, disability is the consequence of social
orderings which have the effect of restricting the actions of people with
impairments. As is defined by Oliver (1996);
Disability: the disadvantage or restriction of activity caused by a
contemporary social organisation that takes little or no account of
people who have physical impairments and thus excludes them from
the mainstream of social activities.
(Oliver, 1996: 22).
It is true that the Social Model provides a sense of liberation from the
‘personal tragedy’ implied by the medical/individual model and has gone
some way towards demanding social change. However, some scholars and
activists have grown critical of this model, and this will be described further
in Chapter 5.
Thomas (1999) puts forward an alternative definition of disability: “Disability
is a form of social oppression involving the social imposition of restrictions of
activity on people with impairments and the socially engendered
undermining of their psycho-emotional well-being” (Thomas, 1999: 3). This
definition has been found to be much more inclusive, as it contains not only
the structural, material limitations that disabled activists and scholars have
been continually and sometimes triumphantly battling against, but also
encompasses some of what Reeve (2006) terms as the ‘barriers ‘in here’ –
the feelings that we incorporate about
ourselves
that prevent or hinder us
from participating as fully as possible in society. I believe we need to further
20
Disabled or Not Disabled? That is the Question….
promote this nuanced understanding of the social model, and this argument
will be developed in my analysis.
Reeve (2004) asserts that remodelling disability from an individual, medical
problem into a model which concentrates on the restrictions imposed by
society has been vital in the move towards the emancipation of disabled
people. However, she proposes that without a recognition of the psycho-
emotional dimensions of disability, we cannot progress further. She goes on
to state that it is the reactions of others that most affect our psycho-
emotional wellbeing, a view echoed by many others (Thomas 1999; Goodley,
2011; Finkelstein 1980, Kanuha 1999). Reeve proceeds to discuss
internalised oppression, which is a huge factor in the lives of people with
non-apparent disabilities (as well as those with more visible ones), which
shall be discussed in more detail in
Chapter 5.
I agree with Reeve when she
states that this is one of the more crucial factors in the psyche of people with
disabilities, and one that is hugely under-explored.
Another criticism of the social model is that it has not significantly altered
the way that disability is socially constructed. Rather, because this model
relies on the social construction of disability in order to fight for rights and
equality, it has failed to question its very nature (Clapton& Fitzgerald, 1990).
Again, going back to the point made in my Introduction, this relies on the
application of a very clear and strict binary of dis/ability: the “in/out”
(Valeras, 2010:9) question without proposing to investigate the very
construction of how disability came to be. Indeed, rights-based discourse has
…Become a way of constructing disability by locking people with
disability into an identity which is based upon membership of a
minority group. Entitlements thus become contingent upon being able
to define oneself as a person with disability. And the conceptual barrier
between 'normal' and 'abnormal' goes unchallenged, so that while one
may have entitlements legislatively guaranteed, 'community' which
cannot be legislated for, remains elusive.
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Disabled or Not Disabled? That is the Question….
(Clapton & Fitzgerald, 1990:45).
This has particular ramifications to those whose disability is not immediately
externally verifiable, and whose inclusion in the membership of the minority
group is questioned.
Another crucial criticism of the original understanding of the social model is
the apparent neglect or silencing of the reality of impairment. Perhaps
‘silencing’ is too strong a word; what I mean by this is that disability activists
and scholars have been loath to enter into discussions on how impairment
affects the lives and well-being of people with disabilities for fear that this
…Allows those who wish to see disability as personal, pathological and
impairment specific an opportunity to use a misappropriation of the
social model of disability as justification for preventing or blocking
disability equality.
(Darke, 1998a: 224, cited in Corker & French, 1999:3).
As shall be explored in this thesis, this is an important question that has
been raging within the disability community. In my mind, one of the tasks of
disability studies is to un-do the divisions and the sense of ‘otherness’
surrounding disability by breaking down barriers and allowing dialogue to
flow more freely between all of us, disabled and non-disabled (and the ones
who fall in-between), and one of the possible ways to do that is to appeal to
the sense of humanity by expressing emotions and personal experiences in
the hope that through this, we will find a way to connect.
2b: Terminology and the Linguistic Analysis of Disability
There have been many books, journals and research papers that have dealt
specifically with the terminology attributed to people with disabilities and I
will focus on several of these. This list includes authors who have been
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Disabled or Not Disabled? That is the Question….
pioneers in the construction of disability studies, but is not intended to be an
absolute list to the exclusion of the many other writers on the subject. This
writing simply resonated with me the most, perhaps because several of
these writers are female, expressing their views in what is still arguably a
patriarchal society.
Wendell (1989) discusses her issues with the terminology around disability.
She reports that in 1983
impairment
was defined as “any loss or abnormality
of psychological, physiological or anatomical structure or function” (UN 1983:
1.c 6-7, from Wendell 1989). She goes on to quote the following definition of
disability:
“any restriction or lack (resulting from an impairment) of ability to
perform an activity in the manner or within the range considered normal for
a human being” (UN 1983: 1.c 6-7), from Wendell 1989). However, Wendell
clearly recognises the difficulties inherent within these definitions, as what is
defined as “normal” differs widely depending on the particular cultural and
historical context. Whether an ability has the negative prefix
dis-
in front of it
is relative to the values a society places upon activities and how it distributes
labour. She proclaims, “The idea that there is some universal, perhaps
biologically or medically describable paradigm of human physical ability is an
illusion (Wendell, 1989: 106).
Wasserman et al. (2011) affirm this view,
stating that it was not until the scientific thinking of the 19
th
century that
variations in human functioning were placed into categories of
normal/abnormal. This is associated with the rise in popularity of
developmental psychology and the success of medical treatment, but the
need to rank, measure and categorise people has pervaded into the roots of
our society. As Linton (1998) can certify, being a psychologist by discipline;
“..psychology is responsible for the formulations and research conventions
that cement the ideas of “normal”, “deviant”, “abnormal” and “pathology” in
place” (Linton, 1998: 6). Linton acknowledges that psychology in general
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Disabled or Not Disabled? That is the Question….
seeks to extrapolate the individual that is seen to be or have the ‘problem’
and find some way to either ‘fix’ or ‘other’ them.
Wendell cites the distinction between impairment, disability and handicap as
having moderate benefits to the work of disability studies. Firstly, that these
definitions do include conditions “that are not always recognised by the
general public as disabling” (Wendell, 1989: 107) such as heart disease or
other chronic illnesses that do not cause an
apparent
visible disability, and
secondly, that they do recognise the fact that a disabled person’s
lack
of
ability to do something may in fact be because of social restrictions. This
uncovers two differing notions of disability: one inferring that impairment is
objectively quantifiable and biologically grounded, and the other that
‘disability’ is the social and political limitations to participation. These two
understandings of disability proceed to inform the contrasting approaches to
disability, the medical /individual (Oliver, 2009) and the social, which have
been discussed above. These in turn may strongly affect the self-worth and
self-esteem of disabled people, and have considerable repercussions on the
identity of people with a non-apparent disability.
Passing refers to the notion that oppressed people sometimes pass
themselves off as part of the dominant culture, partly perhaps to avoid
discrimination. This is particularly pertinent to my study, as people with a
non-apparent disability (myself included) often distance themselves from the
‘othered’ group for a variety of reasons, sometimes deliberate, sometimes
unconscious (Linton, 1998: 19). This constitutes a large part of the area I
wish to investigate. Linton notes the possible side-effects of not identifying
with a disabled identity when a person is struggling with an impairment;
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Disabled or Not Disabled? That is the Question….
The loss of community, the anxiety, and the self-doubt that inevitably
accompany this ambiguous social position and the ambivalent personal
state are the enormous cost of declaring disability unacceptable.
(Linton, 1998: 21).
Although there is a social stigma associated with disability, often social
recognition of disability is a great relief to some people as this means they
can get the support and practical help from family, doctors, schools and
other institutions (Wendell, 1989). For example, recognition of dyslexia can
lead to increased levels of support from schools, specialised lessons and
lenience in the marking scheme which can be invaluable to students.
Donna Reeve, in the classic book edited by Goodley & Lawthom (2006),
writes a chapter entitled “Towards a Psychology of Disability: the Emotional
Effects of living in a Disabling Society”. In this, she discusses what she refers
to as ‘psycho-emotional disablism’, referring not only to the disabling
barriers ‘out there’ in the social world, but also the ones ‘in here’; the
negative attitudes and perceptions that we absorb about ourselves and our
value in the world. It is often the beliefs that we internalise that prevent us
from doing something. Wendell warns of the danger of disabled people
marginalising themselves. “We can wish for bodies we do not have with
frustration, shame, self-hatred. We can feel trapped in the negative body; it
is our internalised oppression to feel this” (Wendell, 1989: 113). Reeve ends
her chapter with a warning that failure to take proper account of the psycho-
emotional effects of disablism will have catastrophic effects on the actual
lived experiences of disabled people. Providing ramps or lifts will ease their
access troubles, but this on its own will not be enough to radically improve
the lives of people with disabilities.
There have been many discussions concerning the language used around
disability (Wendell 1989, Linton 1998, Goodley 2011, Reeve 2006, Valeras,
2010, Galvin, 2003) and this, as I have inferred, can have a profound effect
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Disabled or Not Disabled? That is the Question….
on the disclosure of disability and identification with it for individuals with
non-apparent disabilities, especially for those who become disabled in
adulthood. Attempts to sugar-coat disability by using words such as
physically challenged
,
differently-abled
and
handicapable
have been on the
whole dismissed by the disability community because they seem to have an
underlying patronising tone. Words like abnormal, cripple, retard, gimp, freak
have partially been eradicated from everyday parlance but although these
words are generally not used, there is a residue of the meanings and cultural
images behind them still undergirding discriminatory attitudes.
2c: Non-apparent Disability and Identity – The Literature
As I stated previously, this area has been greatly under-researched, but I
have managed to source some interesting articles. For ease of reference, I
will group these into themes.
One of the themes identified is around linking the oppression of disabled
people with other marginalised groups in society. Samuels (2003) expresses
this beautifully in her paper, “My Body, My Closet: Invisible Disability and the
limits of Coming-out Discourse”. She discusses the analogies between
‘coming out’ as gay and coming out “as a person whose bodily appearance
does not immediately signal one’s own sense of identity” (Samuels, 1993:
233). Samuels is using intersectionality here. Intersectionality is the term
used to describe the ways in which different marginalised groups in society
intersect, and how the study of each can benefit the other. The method of
exploring disability through intersectionality is further expounded upon in
articles by Caldwell (2010); Pilling (2013); Schalk (2013); Garland-Thompson
(2005);Erevelles & Minear (2010) and Miles (2007).
This merges beautifully with the second theme, that of the politics of
visibility and hierarchies of disability. This issue is discussed by Wendell
(2001) on the topic of chronic illness who identifies the problem as being
contradictory to the definition of disability as being socially constructed. She
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Disabled or Not Disabled? That is the Question….
proposes that in some cases it is right to focus on our impairments as they
can and do prevent us from doing things.
I believe that this connection has contributed to the neglect of the
realities of impairment in disability activism…because it makes attention
to impairment seem irrelevant to or in conflict with the social
constructionist analyses of disability they want to employ.
(Wendell, 2001: 22).
I will explore this concern in more depth, as it is highly relevant to individuals
with non-apparent disabilities. Let me state briefly why this issue is
important to me. For individuals with a non-apparent disability, attention to
impairment becomes a way of disavowing our ‘normalcy’ – something that
we must do in order to receive recognition as a disabled person; and also to
receive accommodations that may not otherwise be afforded to us. Attention
to impairment is therefore a necessary evil. This in itself can bring a complex
array of conflicting emotions, as I will explore in the proceeding chapters.
This argument is expounded upon in articles by Lightman 2009; Triano 2004
and Woodhams 2003. The problem of identifying as disabled, but then not
having access to the support because of disbelief is explored.
The next theme centres on difficulties of disclosing a disability. Fear of being
judged to be inferior, of sometimes being dependent on other people in a
world where autonomy is valued, of being a burden, of being judged purely
on the impairment rather than skills or personality… all of these can have an
effect on the choice of whether or not to disclose.
This theme is discussed by Lingsom (2008); Samuels (2003); Wendell (2001);
Titchosky (2001); Triano (2004) and Valeras (2010).
A large theme in the literature on non-apparent disability and identity
centres on visibility. Lingsom (2008) investigates this concept, stating that
the preoccupation with visibility has lead the modern society to construe that
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Disabled or Not Disabled? That is the Question….
only the immediately visible signs of impairment are taken seriously. As
Walker (2001) eloquently explicates:
The paradigm of visibility is totalizing when a signifier of difference
becomes synonymous with the identity it signifies. In this situation,
members of a given population who do not bear that signifier of
difference or who bear visible signs of another identity are rendered
invisible and are marginalised within an already marginalised
community.
(Walker, 2001: 209-210).
This leads us to the final theme, self-identity. To quote Reeve (2006) in a
paper that I will make use of throughout my work, “Am I a
real
disabled
person or just someone with a dodgy arm?”. In her paper, she refers to the
fact that it is often the context that makes situations disabling, which fits in
with the social model. In my own experience of disability, I often feel
disabled because of the things that I cannot do
because
of my impairment,
rather than being attributed to the social structures that are/not in place. The
ideology of the social model comes from individuals embracing their disabled
identity and being proud of it; but what if it is not as clear-cut as that? As
Valeras (2010) states;
Conceptualising ability and disability on a continuum is unsupported by
both the disability community and non-disabled people…the disability
community encouraged the dichotomisation of this identity category:
either/or, disabled/non-disabled, in/out.
(Valeras, 2010: 9).
This notion, of conforming to strict binaries, will form the crux of my enquiry
as my aim is to highlight the experiences of living in-between the able and
disabled worlds. To reiterate my earlier argument, I believe we do not need
to dichotomise, classify and segregate – we need to develop a world which
appreciates, values and cherishes all the shades of all of us.
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Disabled or Not Disabled? That is the Question….
CHAPTER 3 -MY APPROACH: ONTOLOGY, EPISTEMOLOGY
AND METHODOLOGY
3a: Paradigm
Let me begin by first outlining my chosen paradigm as this structures the
way I think about and conceive my research.
Cohen (et al.) divides social
science research into two paradigms: the positivist and the interpretive
approaches. (Cohen et al., 2000). The positivist approach takes the view that
social science should use the methods used by the natural sciences
(chemistry and physics) to identify and record social phenomena.
Interpretivists, however take the view that as social science is primarily
concerned with studying human interactions, scientific methods are
inappropriate as humans can change their behaviour if they know they are
being observed. This uncovers an ontological divide about the nature of
social phenomena: are they socially constructed or do they have an
existence independent of the knower? I strongly believe that reality is
socially constructed and is inherently personal and unique to the individual
and the society in which he or she lives.
As Hessler (1992) states:
…What the researcher assumes about the nature of social reality,
either tacitly or explicitly, exerts a strong influence on the types of
research problems chosen for study, the theories used to explain the
problems and the research design decisions made.
(Hessler, 1992: xxiii).
In this next section, I will identify my chosen paradigm and provide
justifications for my choice.
3b: Interpretive Methodology
Believing, with Max Weber, that man is an animal suspended in webs
of significance he himself has spun, I take…the analysis of [those
webs] to be therefore not an experimental science in search of law but
an interpretive one in search of meaning.
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Disabled or Not Disabled? That is the Question….
(Geertz, 1973: 5; cited in Yanow et al., 2006: 6).
I believe that humans are active agents in creating their own reality, and so
it follows that the very nature of social reality is a product of the intentions of
human agents. Interpretive research methods are a way of eliciting the
crucial conceptual dimension of action. The task of the researcher is to
understand the multiple social constructions of meaning and knowledge
(Robson, 2002:27). As an interpretivist researcher, I need to understand the
extent to which disability is a social construct; and to understand the
meaning people attribute to disability, how they come to categorise certain
people as disabled, and thus how the disabled identity is formed. In this way,
my approach can be said to have a strong constructionist flavour as I
strongly believe that reality is socially constructed. There are many strands
to interpretive methodology, and I will be outlining the ones that I have
found to be the most relevant to this study.
I am interested in exploring the ways that self is constructed through
language which attributes power to some sections of society and serves to
isolate and oppress others; and so there will an emphasis on examining
language, which provides indicators of power-knowledge relationships. Thus,
the research will touch upon the post-structuralist paradigm.
One of the criticisms of interpretive research methodology is that is does not
allow for generalisations to be made that are applicable to all of society. But
interpretive researchers hold that this form of research attempts to
understand meanings and social actions from the point of view of the
participants themselves, and so develops insights and understandings that
are far richer than statistical data. Arguably, qualitative or interpretive
analyses allow us to develop a far greater, more meaningful view of human
social interaction. In my research, exploration and insight into the subjective
experience of my research participants is inherently valued; this is the main
reason I have chosen this paradigm.
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Disabled or Not Disabled? That is the Question….
Interpretive research is hermeneutic in character, in that it necessitates, as
the name implies, a reading or interpretation of the text or data. It is
important to note that all data can be interpreted in different ways; texts
have a pluralistic nature. I am seeking to uncover and illuminate phenomena
that generally go unnoticed because of their ubiquitous, common-place
nature. My aim in this thesis is to invite the reader to think about the very
foundations on which society rests and to begin to question the need and
usefulness of binaries. As Yanow et al. (2006) state, “…Interpretive work of
all kinds, in rendering tacit knowledge explicit, makes silenced discourses
speak, thereby engaging questions of power” (Yanow et al., 2006: xx). My
research question is about the ways in which non-apparent disability affects
identity, and by bringing forth the hegemonic ideologies that sustain the
suppression of disabled people, my hope is that the reader will begin to
question the very fundamentals of our society. More specifically, the strong
cultural reliance on visibility to extract meaning.
The techniques I intend to employ to enable me to provide a rich, personal
account of the participants will be outlined below. These are: in-depth, semi-
structured interviews which will be then formulated into themes by the mode
of thematic analysis. The exploration will be aided by the use of narrative
analysis, as much of the focus of this latter method focuses on how
experiences are reconstructed and interpreted and fits in well with the
overall design of the research project. The final method will be
autoethnography, which will be woven through the research in order to
provide a rich, subjective account of my own deeply personal experience of
having a non-apparent disability. The reason I am using so many different
methods is to provide a rich tapestry of both personal experience (gained
from autoethnography and in-depth interviews) and scholarly research. This
study will be unapologetically subjective, as “…The social world we inhabit
and experience is potentially a world of multiple realities, multiple
interpretations” (Yanow et al., 2006: 13). I wish to reflect this in my study.
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Disabled or Not Disabled? That is the Question….
3c: Methods
3c.1 Autoethnography
Autoethnography links the personal to the cultural in a way that,
theoretically at least, provides a break from the often dry, arduous style of
academic writing. It is a form of narrative analysis that enables us to see the
life of the researcher as a subject who is involving herself in the melange of
the research being carried out. It provides life, interest, a real substance to
the arguments being made in the research. Theoretically anyway. I will try
my best to do this; to weave the threads of theory and academic research
into accounts of my own personal experience with/in the world of disability.
Autoethnography is defined by McIlveen (2008) as
A reflexive means by which the researcher-practitioner consciously
embeds himself or herself amidst theory and practice, and by way of
intimate autobiographic account, explicates a phenomenon under
investigation or intervention.
(McIlveen, 2008: 13).
The use of one’s own data in research has been found by many researchers
(McIlveen, 2008; O’Toole, 2013; Moss, 2013; Tenni, Smyth & Boucher, 2003)
to be useful in providing a rich, ‘real’ account into the subject or
phenomenon being studied.
However, reading Mogendorff (2013) has warned me of the dangers of re-
producing disability as a negative concept. The aim of this research is to
highlight the very real problems faced by people with non-apparent
disabilities; and so does, in many ways, focus on the
dis-
ability. In placing the
emphasis here, my aim is to achieve some recognition of our struggles, and
at the same time to challenge the view of people with any disability as
inferior. Many of the narratives produced by myself and my participants show
the difficulties experienced in living in an ableist society, and my results
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Disabled or Not Disabled? That is the Question….
show that it is often the attitudes and expectations of others that are
disabling as oppose to the material structures. It is clear from the work of
many other scholars, researchers and activists that this is also the case for
people with visible disabilities; but it may be that it is more prevalent in the
expectations of others with people who do not appear to have a recognisable
difficulty. It would be interesting to investigate that concept more but it is
unfortunately beyond the scope of this paper.
Initially it was difficult to judge whether or not to disclose my status as a
person with a non-apparent disability into this research. Mogendorff (2013)
states, “Incorporating one’s own lived experience in research implies a
blurring of boundaries between the private, the professional and the public”
(Mogendorff, 2013: 1). However, O’Tool (2013) argues that disclosing our
relationship to disability is inevitably and always a positive thing, pointing
out that “If we, as a profession, tout that “disability as an identity is never
negative”(Siebers, 2008:4) then why would we want individual relationships
to disabilities to be private?” (O’Toole, 2013:4).
3c.2.
In-depth, semi-structured Interviews
My aims in this study are to gain insight into how non-apparent disability
affects identity. One of the best ways I can discover the feelings of other
individuals with different disabilities that are not readily apparent to the
outside observer is to conduct in-depth interviews. Part of the justification for
the use of interviews rather than deep ethnographic fieldwork is, a) time
constraints do not allow me to spend considerable time in the lives of my
participants (nor, I suspect, would it be desirable on their part to have me
taking account of their everyday interactions!) and b) I am able,
theoretically, to present them with an initial transcript with my interpretation
of it. This will allow the participants to clarify their meanings, assess the
content and actively consent to their inclusion in the study. In this way, the
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Disabled or Not Disabled? That is the Question….
participants will be co-researchers. This will also offer a unique opportunity
to detect any problems in my interviewing technique and reassess some of
the questions used, if necessary. What makes the interviews in-depth is the
fact that they will be semi-structured; allowing for deeper exploration into
the subjects that are pertinent for each participant, and for “extended
probing, for pushing further into the personal meaning of clichés and
conventional phrases, for testing whether or not the first impression gained
was the correct one…” (Lane, 1962: 9). This will allow me to reflect back the
meaning behind what was said, perhaps giving some extra clarity to the
participants’ thinking. Moreover, in-depth research is “typically concerned
with indexicality – the tendency for a given object or phrase to take on
different meanings in different contexts” (Yanow et al., 2006: 139). As
researchers, we must therefore press for clarification of statements or
viewpoints when we are unsure of their meaning.
By consciously seeking clarification and elaboration through in-depth
interviews, I can be further satisfied that I have captured the unique
perspectives of individuals with a non-apparent disability.
The interviews will be semi-structured, as stated previously. I will ask some
questions to each participant, to give the interviews some structure.
The first question I will ask is about their conditions. This could potentially be
construed as the medical/individual understanding of disability, but it is
rather an attempt to gain an understanding of what it is like to live with their
particular disability, if they themselves perceive it as such. The second
question I will ask pertains to the extent the participants would identify
themselves as being disabled. This is a crucial question in the research, and
one I don’t expect I will get a ‘yes’ or ‘no’ answer to. I go on to explore the
possible reasons for this answer – were they influenced by society’s
depictions of disabled people (or lack of) in the media, for example? The next
two questions that I will ask relate to discrimination, and whether they feel
that the in/visibility of their disability has an effect on this. Much of the
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Disabled or Not Disabled? That is the Question….
literature (Valeras, 2010; Reeve, 2006; Wendell, 1989) reflects that the
in/visibility of impairment(s) has a significant effect on discrimination, both
positive and negative, and I want to see whether this is the case for my
participants. Finally, I will allow each participant to address any points or
questions that haven’t been included that they feel are necessary to the
discussion.
3c.3. Participants
The participants were carefully selected from amongst my colleagues,
acquaintances and friends. In this way, I had previously established a rapport
with each of them and had some prior knowledge of their experiences with
non-apparent disability. I selected four informants, as I feel this to be a
realistic number to handle, with the additional data from my auto
ethnographical research.
As I stated in my introduction, ideally I would have
liked to have included more, with varying dis/abilities but the time scale and
my resources unfortunately did not allow me to do so. The majority of my
respondents were women; this is because, according to Morris (1994) and
Trypuc (1994) women are more likely than men to be disabled by non-
apparent disabilities (Wendell, 2001). It would be essential, though, to obtain
a male perspective on this.
3c.4. Medical Narratives of the Participants
Jacqueline is a woman in her 4o’s. She has had brittle asthma for a number
of years, and she was recently diagnosed with ADHD which she describes as
a ‘neurological difference’. This affects her ability to concentrate and pay
attention to things which don’t interest her. She also describes her emotions
as being very difficult to control.
Matthew is the only man in the group of participants. He describes his
condition as Myalgic Encephalomyelitis (M.E.) now more commonly known as
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Disabled or Not Disabled? That is the Question….
Chronic Fatigue Syndrome (CFS). He was diagnosed with this disability at age
11. He finds it difficult to accurately convey to people the realities of living
with this condition, as the general public construes it is mere tiredness but it
affects his cognitive and psycho-emotional state as well.
Amal is a pregnant mother of two in her 30’s. She had something which was
described as polio when she was 5 years old, resulting in her right leg being
4 inches shorter than her left leg. She was born in Somalia but moved to the
UK as a child.
Mandi also has M.E. She contracted glandular fever when she was 18 and
was much later diagnosed with M.E. She describes her condition as feeling
exhausted all the time and ‘flu-like’. Her disability is further confounded by
the spreading arthritis in her hips and knees, and she has recently had hip
surgery.
After re-presenting the interview transcripts to the participants, most were
satisfied with what I recorded and only one, Jacqueline, had anything more to
add. I welcomed her response over email. Mandi was astonished at how
pessimistic her narrative was, and has since decided she needs to change
the way she views herself. All were happy for me to proceed with the
analysis.
3d. Ethical Procedures
This study was carried out in accordance with the ethical procedures of the
University of Sheffield 2013. All consent was given as evidenced by the
‘ethical considerations’ section in my appendix.
3e. Thematic Analysis
As I inferred earlier, the methods I will be using will be interwoven with
thematic analysis to give my research a stronger grounding and to relate
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Disabled or Not Disabled? That is the Question….
personal troubles to public issues (Mills, 1959). This will help me to gain
insight into the research topic more broadly, to then identify themes or
patterns within it. I would suggest that my research, because of the inherent
complexities of the overarching question, will uncover “a complex model
with themes, indicators and qualifications that are causally related”
(Boyatizis, 1988: vii). For example, my broad research question is about how
non-apparent disability affects identity. I expect all of the themes I identify to
run into and sometimes conflict each other, in the way human thoughts and
emotions often do. All of these themes have an inter-relational quality, and
much of my research so far has struggled with the concept of pulling these
strands apart as they clearly have a causational effect upon one-another.
Moreover, I struggle with the very concept of binaries, being of mixed
heritage and the possessor of a non-apparent disability. The very need to
demarcate people, lives, experiences, to classify and rank them, is abhorrent
to me; and yet I am attempting to do so. However, one of the advantages of
thematic analysis is that it can be used to identify themes running
concurrently
within
and
across
subjects, recognising and drawing out
patterns to aid insight into another person’s world.
One of the key obstacles identified by Boyatzis (1998) is that of
sampling.
This has some relevance to me as most of my participants are women in
their 30’s and 40’s. Three out of the four (or for out of the five, if you include
myself) are in further education. Only one is a man. This may skew my
results dramatically, and therefore the reliability of my research may suffer.
However, I simply do not have the resources available to me at this time, and
this limitation certainly invites further study.
3f. Epistemological and Theoretical Orientations of
Analysis
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Disabled or Not Disabled? That is the Question….
My approach will be influenced by a number of schools of thought, hopefully
reflecting my epistemology; the differing ways of
knowing
the world that
influence my way of
being
in the world.
In the first two chapters, I used a social constructivist approach to trace the
story of disability. Like Wendell (1989, 1996), Goodley (2010), Oliver (1990,
1999) Abberley (1987) and others, I believe that dis-ability is a social
construct that is inherently time, culture and context- dependent. In my
analysis, I shall use the mode of thematic analysis (as described in Chapter
3d) to illuminate the data which will be heavily influenced by both social
psychoanalysis and feminist discourse.
Many of the traditional models of disability
have been criticised as they focus
too much on material structures. This ignores the effects that formative
aspects of personality and personal history can have on the lives of people
with disabilities, as they shape people’s experiences of impairment and self.
This approach will explore the contribution that social psychoanalysis can
make to the understanding of disability, especially in relation to individuals
with a non-apparent disability.
Disability activists and scholars have been loath to apply psychology to
disability, as it tends to lean heavily towards a thorough investigation of the
inner experiences of the person – the internal, individual realm. This recalls
in many people’s minds the individual, medical model of disability and the
blame and shame bound up with it. However, psychoanalysis is in its
broadest definition a way of exposing connections within and between
people, and an attempt to uncover the myriad of ways that the self is formed
as a response to and against this. The dominant ideologies passed through
interaction with others may well have a significant effect on a person’s sense
of self. It is probably true to say that the dominant ideologies and
perceptions of disability may filter through, however subtly, to the sense of
self, self-esteem and ultimately self-worth of people with disabilities.
Moreover, for people with non-apparent disabilities, it may lead to a
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Disabled or Not Disabled? That is the Question….
relatively high degree of internal dissonance.
Social psychoanalysis, in
conjunction with a feminist perspective on disability, demands changes to
both environmental structures and attitudes, rejects the catchall labels
characteristic of the medical model, and rejects a unitary, fixed concept of
the self (Goodley, 2010). Both social psychoanalysis and feminist theories of
disability hold that binaries are cultural continua, not fixed and static. This
viewpoint is akin to my own, and therefore I shall try to flavour my analysis
with social psychoanalytical and feminist discourses.
As my disability is an acquired one, my own views on disability prior to my
accident may well have been subconsciously peppered with a rejection of the
disabled body. Part of my own struggle now is to incorporate these feelings
into a new sense of identity in which the negative and positive consequences
of my impairment and resulting disability can be discussed in relation to the
wider political and social forces embedded in its production.
From a feminist perspective on disability, the rise in popularity of ‘writing the
self’ (Thomas 1999) has provided alternative ways of understanding what
and how knowledge is produced, reminding us that all knowledge is situated
– produced in a context that is time, place and culture-specific, and one that
illuminates social positioning (Thomas, 1999: 69).
Narratives are useful in research precisely because storytellers
interpret the past rather than reproduce it as it was. The “truths” of
narrative accounts are not in their faithful representations of a past
world, but in the shifting connections they forge among past, present,
and future.
(Reissman, 2005:6).
Narrative accounts of people’s everyday experiences can tell us an incredible
amount about disability, society and identity, and this is what I am hoping to
do with this study.
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Disabled or Not Disabled? That is the Question….
Findings and Analysis
As described in Chapter 3e, this section will chronicle the themes that I have
extracted from the narratives of my participants. They will be interwoven
with my own auto ethnographical experiences, and literature pertaining to
the theme will be used to support this data.
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Disabled or Not Disabled? That is the Question….
ANALYSIS CHAPTER 4: INDIVIDUALISM AND THE MEDICAL
MODEL
This theme relates strongly to the subjects discussed in Chapter 2, and
reference will be made on occasion to this chapter. This theme portrays how
the individualistic culture and the self-blame of the medical model have
penetrated into the lives of my participants and I.
4a. Writing oneself as
Really
Disabled
...Disabled people are expected to portray a pathologised, dependent
sense of self in order to claim disability benefits and services….
Claimants are expected not only to confess details of their own bodily
inadequacies but, in many cases, to enact a fantasised version of their
own impairments if they are to stand any chance of receiving the
allowance. They are required to brutally pathologise themselves in
order to access welfare benefits.
(Goodley, 2011: 724).
My informant, Mandi, has significant issues with this point, especially in
relation to fluctuating ill-health. She explains the ebb and flow of her M.E,
and the relatively good way she occasionally feels and the utterly debilitating
state she finds herself in when she is simply too exhausted to get out of bed.
Mandi has great trouble with what she describes as the “guilt and shame” of
receiving DLA at times when she feels strong enough to work. She states, “…
Believe me, at the core level, it doesn’t feel great to be taking money off the
state that you’re not earning yourself, knowing that the people who give it to
you are disapproving, so you can’t win on every level”.
There is no account taken of the ‘good’ and ‘bad’ days that we all experience
within the DLA application. As another of my participants, Matthew,
explained:
It’s like, ‘how far can you walk?’, ‘can you bend over and touch your
toes? ’Yes I can bend over and touch my toes but then I feel dizzy and
fall over. If I were to do that repeatedly I would feel very ill after
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Disabled or Not Disabled? That is the Question….
(laughs) which obviously you are doing repetitive tasks when you’re
working.
Matthew, like Mandi, has M.E. which is very difficult to define in the objective,
measurable way necessary for Disability Living Allowance assessment forms.
As such, Matthew is often forced to use the ‘additional information’ section to
explicate the reality of living with his condition; he feels there is no-where
else to explain the debilitating way that M.E affects his life. In a culture that
puts so much emphasis on independence, it is often difficult to admit and ask
for help. Matthew discloses that as doctors didn’t even recognise M.E as a
debilitating disability, he would often push himself further, attempting to
minimise the reality of his condition.
4b. ‘Splitting’ the Self
Passing, as I briefly discussed in Chapter 2, is a very common consequence
of this, as there is often little understanding of non-apparent disability. From
personal experience, I can say that the urge to ‘pass’ often puts incredible
strain on oneself. I am still haunted by the expectations that I place on
myself, in all areas of my life. I am often bitterly disappointed that I fail to
live up to both my own expectations and the expectations of those around
me, especially those of employers. I try wherever possible to minimise my
physical and cognitive limitations at work – splitting those parts of myself as I
know them to be undesirable and unwanted aspects, particularly in a
competitive labour market. Chandler (2010) refers to her disability as “an
uninvited guest who was there to stay. Forever.” (Chandler 2010: 4). This is a
very poignant expression of how she experienced her disability, growing up
as she did in an environment which encouraged her to think of disability as
“a problem in need of a solution” (Michalko& Titchosky, 2009:5 cited by
Chandler, 2010:2) and one that resonates fully with me. At other times, I feel
that I am so tired of trying and failing to meet the standards of the able-
bodied world and it would be so nice to be embraced in a world that was
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Disabled or Not Disabled? That is the Question….
more accepting of difference. My fear is, though, that I would not be
accepted into that world because I am “not disabled enough” (Lightman et
al. 2009).
4c. Whose Responsibility is it Anyway?
As I inferred in Chapter 2, the very notion of successful rehabilitation after
accidents or illness and recovery on the road to ‘normality’ can leave
individuals with any kind of disability feeling inherently unsuccessful, as
failures at the very core of life, if they are unable or unwilling to function as
before. I unconsciously set myself the task of returning to ‘normality’,
unwittingly setting myself a never-achievable goal. Because of the
individualistic culture that I am accustomed to, and my beliefs arising from
my training in humanistic counselling, I am inclined to understand my
failures to recover successfully to a state of normality as my fault; that I
didn’t try hard enough and/or I wasn’t good enough to ‘improve’ my life and
make things easier for myself and my loved ones. The resulting ‘mess’ is my
responsibility, and mine alone.
Jacqueline eloquently describes the link between self-blame, impairment and
the psychotherapeutic goal of ‘self-actualisation’ in the following excerpt
from her narrative:
We [myself and Jacqueline] talked about having an identity and how it
changes after diagnosis. With me, my identity wasn’t a good one – I
was treated like a nuisance, and lazy with it. I really thought that’s
what I was. The asthma was diagnosed first and even with that, I’d
think, ‘If I just tried harder I’d be able to do it,’ blaming myself for not
being able to breathe. I didn’t know what ‘try harder’ actually meant,
so I’d tense my shoulders, like I was trying to lift something heavy and
work like that - even in my 30s I was still doing it.
This view, of the individualistic notion of impairment and disability being the
responsibility of the disabled person, is echoed by Mandi. She tells of her
belief in the power of thinking and how that is responsible for her situation.
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“If you say you’re miserable, you’ve not got any energy, overweight, not got
a man… well, you’ve manifested that, you know, through your thinking…
well it’s past, I’ve seen through it, I don’t have to do it anymore”. This abrupt
change in her narrative also represents the positive side of individualistic
thinking: her strong belief that if she chooses to make changes in her life, her
conditions will improve, relating back to the topic of Chapter 2. This is also
the belief of humanistic counselling, and can and does work well for some
people.
The motif running through each of these sub-themes is that the responsibility
for your situation is yours, and yours alone. If you are troubled by the stares
of people in the street, counter-act that by appearing more ‘normal’. If you
struggle to do something, try harder. This can be both empowering and
profoundly limiting.
The main theme of the next chapter focuses on the problems inherent within
the social model and ways that these could be lessened. I will begin by
expounding on the issue of impairment and the importance of the inclusion
of the social realities of living with an impaired body into disability discourse.
This chapter will also explore the psycho-emotional dimensions of disablism
and reiterate the contribution that this can make to disability discourse. In
fact, I believe it to be an essential element integral to any discussion about
disability. The potential benefits that could be achieved from the addition of
personal experiences of disability has recently been well-documented by
(mostly) female writers, and a proportion of the following chapter will be
given over to the discussion of the points made by writers such as Reeve,
Wendell, Morris, Samuels, Hughes & Paterson and Thomas, along with
narratives from the participants of this study.
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Disabled or Not Disabled? That is the Question….
ANALYSIS CHAPTER 5: THE VALORISATION OF EXPERIENCE
How do we enter into a discussion about impairment without reducing it to
an individual, medical matter that is the responsibility of the ‘disabled
person’ themselves? That is the debate that has been raging amongst
disability activists and scholars for the past half-century, and is a question
that I don’t by any means claim to be able to resolve. However, I feel that it
is a question that cannot be ignored, especially in relation to non-apparent
disability and the fight for recognition. The following chapter is an attempt to
integrate the experience of disablement from a social model context and the
medical narratives of my participants, in order to foster a more nuanced
understanding of the complexities of life with a non-visible disability.
5a: Incorporating illness and impairment as lived social
realities
Authors like Finkelstein, Barnes and Oliver argue persuasively that it is
essential that impairment and disability be disassociated from each other for
people with disabilities to be freed from discrimination. However, other
theorists such as Thomas (1999), Wendell (1989, 2001) have argued that
impairment and disability impinge upon each other in a way that makes it
almost impossible to separate them. Pain, exhaustion and paralysis are
impairment effects, but are no less real, no less disabling, than a flight of
stairs is to the wheelchair user. It is my contention (a view that is shared by
many other theorists) that it is impossible to understand the experiences of
disabled people without considering both impairment and disability. Indeed,
as Morris (1998) contends;
…We need to put back the experience of impairment into our politics.
We need to write about, research and analyse the personal experience
of our bodies and minds for if we don’t impose our own definitions and
perspectives then the non-disabled world will continue to do it for us in
ways that alienate and disempower us.
(Morris, 1998:15).
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Disabled or Not Disabled? That is the Question….
In failing to acknowledge the very real restrictions imposed on people by
their impairments, a significant proportion of people with less visible
disabilities may feel further alienated in a society that already seeks to
‘other’ them. For many of my participants, it was the lack of understanding
of society that caused them problems. As Matthew explains;
(M.E) is often very misunderstood, people think it’s just tiredness but
it’s a lot more than that, it affects cognition, memory, concentration…
just a general feeling like flu all the time, muscle pain, headaches… it’s
very debilitating.
Wendell (2001) endorses this view, highlighting the point that whilst
disability should not
always
be associated with illness and disease, it is
important to recognise that some disabled people are
indeed
hindered by
“physical or psychological burdens that no amount of social justice can
eliminate” (Wendell, 2001:18). In
her article, Wendell goes on to almost
draw a line between what she terms as ‘healthy’ and ‘unhealthy’ disabled,
stating that the stereotypical view of a person with a disability is
“permanently and predictably impaired” (Wendell, 2001:21), but a person
with a chronic illness does not necessarily ‘fit’ that picture. As Matthew
inferred, people with chronic illnesses or other non-apparent disabilities have
to frequently remind society, and themselves, of their limitations. This
difference may further alienate them from ‘normal’ disability activists and
groups. Samuels (2003) concurs:
I have often felt a similar gap in disability studies, even as I have
benefited hugely from their insights. Their focus on visuality and the
“gaze” sometimes leads me to question if my extremely limiting and
life-changing health condition really qualifies as a disability according
to the social model.
(Samuels, 2003:248).
This narrow and limited view of what disability is and what it is not has
served in many ways to constrain the richness of expression and silence the
experiences of those with non-apparent disabilities. Hughes & Paterson
(1997) have stated,
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Disabled or Not Disabled? That is the Question….
The definitional separation of impairment and disability which is now a
semantic convention for the social model follows the traditional,
Cartesian, western meta-narrative of human constitution. The
definition of impairment proposed by the social model of disability
recapitulates the bio-medical ‘faulty machine’ of the body.
(Hughes & Paterson, 1997:329).
The impaired body needs to reappear in disability discourse with the culture,
history and meaning that it encapsulates. The meaning that surrounds it is
more than medical; it is an experience in and of itself (Hughes & Paterson,
1997).
It has been notoriously difficult to have the effects and subsequent needs of
brain injury understood and adequately accommodated for, as they are so
diverse and depend entirely on the severity of the injury and the areas of the
brain affected. My injuries are similar to those of a stroke, in that I have a
loss of feeling and movement in my right arm. I also occasionally have
cognitive limitations, such as difficulty remembering words, exacerbated by
fatigue and anxiety. Because they are fluctuating, and because I don’t have
the outward appearance of the stereotypical ‘disabled person’, very few
accommodations are afforded to me. Patience and understanding is what I
need, and rarely get.
Liz Crow (1996) speaks eloquently about the need for recognising the
debilitating effects of impairment, warning us that the silencing of these
realities may very well impact on future accommodations. If it is not talked
about and openly acknowledged, we cannot hope to make further
progression.
Individuals with chronic illnesses “challenge homogenized constructions of
ability, disability, health and illness” (Lightman et al., 2009:4) and unsettle
the orthodoxy of either/or, disabled/non-disabled in a way that truly
challenges binary oppositions in society. The narratives of Mandi and
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Disabled or Not Disabled? That is the Question….
Matthew
i
mpart the lack of understanding of a very real world, that an
increasing amount of people are part of, where the binary oppositions of
dis/ability merge and fuse together. The living in-between necessitates the
creation of identities that are fluid and elastic, “an inhabiting of permeable
borders that are fused, fleeting and held in tension” (Lightman et al, 2009:4).
We are constructing identities that are multiple and sometimes conflicting,
and this can contribute, in my case at least, to the splitting of the self into
acceptable and non-acceptable components; “re-injuring the self through
internalising discriminatory values (Marks 1999a), lowering self-worth and a
lessening sense of intrinsic value (Thomas, 2007)” (Goodley, 2011:718). This
notion will be explored further in the next section of this chapter.
5b: Psycho-emotional Dimensions of Disablement
Writers such as Barnes, Finkelstein and Oliver have tended to dismiss
psycho-emotional aspects of disability as associated with impairment effects
and as such personal, private affairs that have little to do with creating
equality for disabled people. However, other writers such as Carol Thomas
(1999) have linked these private troubles to public and political issues.
Thomas (1999) maintains that these psycho-emotional aspects of disability
have a strong link to the disabling attitudes prevailing in our society, and
therefore their importance should not be disregarded. As Crow (1996) points
out, if we adhere too much to the social model, our right as individuals with
disabilities to express the realities, anxieties and fears about our
impairments may be diminished. For this reason, I feel that there is a need to
develop a model wherein we are afforded the opportunity to openly discuss
the realities of our impairments without that necessitating a devaluation of
our inherent worth in society. Furthermore, stares and discriminatory
attitudes can dis-able us in more lasting and deep-rooted ways, as Reeve
(2006) identifies:
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Disabled or Not Disabled? That is the Question….
Psycho-emotional dimensions of disability would include being stared
at or patronised by strangers, actions which can leave disabled people
feeling worthless and ashamed, and may end up preventing them from
participating in society as effectively as physically inaccessible
environments.
(Reeve, 2006:96).
Stares can be as disabling as stairs, and can leave people with disabilities
feeling psychologically and emotionally distraught. Perhaps it is important
here to give my understanding of psycho-emotional dimensions of disablism
and how this affects the well-being and identity of individuals with a non-
apparent disability in particular. The issue of in/visibility will be addressed in
more detail in the following chapter, but I feel that this has express relevance
here as the issue of not being believed to have a disability, and constantly
having to draw attention to it adds another dimension to the experience of
disability. For example, on a recent trip abroad, I asked for assistance to put
something inside my rucksack. I explained that I had difficulties with my
hand so it would be rather problematic to do it myself. The request was
refused on the grounds that I didn’t have a medical note, even though my
hand is visibly ‘abnormal’. Some of my participants also reported similar
experiences; Amal explained the difficulties using her blue badge on public
transport and how the stares of disbelief made her feel; Matthew talked of
the disbelief of the medical profession and how that made him try to ignore
the fact that he was ill which made things worse for himself in the long run;
and Jacqueline said,
Being seen as incapable can make you incapable, if you know what I
mean. People see it as a moral failing when you’re not doing things
that other people (pause) think that you should be able to do, so things
like erm if I don’t turn up on time or I get the date wrong or I lose my
work…people think it’s slipshod, you know.
The psychological and emotional effects of living in an ableist world can be
hugely detrimental, perhaps exacerbated for individuals with non-apparent
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Disabled or Not Disabled? That is the Question….
disabilities by having little or no visible signs of impairment. This may lead to
a great degree of internal dissonance. For me, continually having to point out
my limitations causes me significant emotional distress, reminding me as it
does of not only the events of the accident, but also my resulting dis-ability.
Many medical sociology publications discuss the “lost or shattered self”
(Gelech & Desjardins, 2010:67) following injury, and I believe this to have a
grain of truth about it. Although this view is contentious, resembling as it
does the ‘personal tragedy’ characteristic of the individual model, I do
recognise myself in this description. As brain injury affects all survivors in
different ways, I cannot attempt to speak for all, but my injuries did leave me
with a definite sense of a lost and shattered self. Due to post-traumatic
amnesia, I didn’t know even basic things about myself; my favourite books,
hobbies, desires and so on. Part of my recovery was re-establishing an
identity, and that identity was to be as ‘normal’ as possible. In doing so, I
failed to take account of the realities of my new impairments and incorporate
them into my new identity, meaning that I internally ‘other’ parts of myself
that, in the 10 years following my accident at least, I deemed to be
unacceptable. It is only now that I am starting to question the ideology and
beliefs that informed these negative evaluations of myself, and slowly start
to accept these aspects that are so integral to the self that I have become.
As Thomas (1999) argues, negative attitudes and assumptions about
disabled people can become internalised, and therefore have an enormous
effect on how they view themselves, both as operating within society and as
individuals.
Mandi also showed signs of the damaging emotional effects of how she
perceived society as viewing her, talking of the “guilt” of receiving DLA when
on her good days she didn’t feel she deserved it, making her feel like a
“scrounger”. Jacqueline states, “It took ages to get the DLA stuff sorted out…
I really struggled with labelling myself like that”. This reluctance to
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Disabled or Not Disabled? That is the Question….
acknowledge limitations corresponds to the notion of stigma, and what
Goffman (1963) referred to as the negotiation of a “spoiled” identity. As
noted by Hogan (1999),
…When a person is confronted with the threat of marginalisation, they
may experience a sense of shame, guilt or anxiety because they
recognise that they lack something or possess something considered
by others to be undesirable.
(Hogan, in Corker & French, 1999:83).
Inherent in the ‘guilt and shame’ is the underlying assumption that we are
somehow less than, inferior to non-disabled people. As I have tried to assure
the reader, I do not claim to speak for all people with disabilities; I can only
speak with certainty about myself, and with an interpretation of the
statements of my participants. However, there is some evidence from the
literature (Thomas, 1999; Wendell, 1989, 2001; Reeve, 2006; Linton, 1998)
that this view is shared. These assumptions are inextricably bound with
implicit messages in the public narrative about the impaired body as being of
lesser value than the unremarked-upon (Galvin, 2003) ‘normal’ body.
Thomas, in talking about her experience of being born without a left hand,
says,
I still struggle with the ‘reveal or not to reveal’ dilemma, and more
often than not will hide my ‘hand’ and ‘pass’ as normal. But
concealment carried, and continues to carry, considerable
psychological and emotional costs and has real social consequences.
(Thomas, in Corker & French, 1999:54).
With my right hand being virtually paralysed, I can empathise very strongly
with Thomas. Whilst in hospital, the physiotherapists and medical
professionals presented me with hideous correction aids, and encouraged me
wherever possible to keep my hand out of sight. The message is clear:
“Conceal that which is ‘bad’ or shameful, make things appear to be ‘normal’”
(Thomas, in Corker & French, 1999: 54).
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Disabled or Not Disabled? That is the Question….
As has been noted increasingly by disability activists, theorists and scholars,
inviting a discussion on the psycho-emotional effects of disablism into
disability discourse would contribute to a more nuanced understanding of the
experiences of disabled people. The very real psycho-emotional effects of
living in a society in which we, as persons with a disability, are continually
devalued or felt to be, should not be thought of as irrelevant to disability
politics; but rather as an integral, crucial part of it.
5c: Validation of Personal Experience
There is a tendency within the social model of disability to deny the
experience of our own bodies, insisting, insisting that our physical
differences and restrictions are entirely socially created. While
environmental barriers and social attitudes are a crucial part of our
experience of disability - and they do indeed disabled us - to suggest
that this is all there is to it is to deny the personal experience of
physical and intellectual restrictions, of illness, of the fear of dying.
(Morris, 1991: 10).
The final section of this chapter addresses the need for a sociology of
impairment, re-linking the body back into disability studies. I have attempted
to argue, along with many others (Lingsom, 2008; Wendell, 1989, 2001;
Thomas, 1999; Patterson & Hughes, 1999) that the social model of disability
denies the embodied experiences of the realities of impairment. Inclusion of
personal experience has been criticised by the proponents of the social
model as being too subjective at the cost of addressing wider public issues.
However, the reverse critique could be levelled right back at them, as the
“everyday reality of lived experience is neglected in favour of a purely
structural analysis of disability” (Patterson & Hughes, 1999:601). Experience,
in this sense, is a culturally informed phenomena, embedded with social and
political meaning, and as such necessitates inclusion in disability discourse.
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Disabled or Not Disabled? That is the Question….
Wendell (1989) notes the barriers to disclosing our experiences: “Much of our
experience goes underground, because there is no socially acceptable way of
expressing it and having our physical and psychological experience
acknowledged and shared” (Wendell, 1989:111). Denying us the opportunity
to share our personal experiences can contribute to the isolation and
alienation that some disabled people feel, potentially more so with non-
apparent disabilities because of the fluctuating and sometimes temporary
nature of the disability. Jacqueline talked to be about the wonderful sense of
community she felt at being able to share her experiences with other people
diagnosed with ADHD, and Matthew is founder of an online resource group
where people can engage with each other and discuss similar personal
narratives. However, Jacqueline also noted a flip side to this beneficial
experience:
And it does make you feel divided because you do spend time with
people who understand and erm I think it makes it even harder for
other people to understand because as much as possible I choose not
to go there.
This highlights the problems that exclusivity can bring – it is not the
acknowledgement and understanding of those in our own group (although
the tremendous sense of re-belonging is seductive and also reaps many
benefits), it is the education and understanding of wider society that needs
to be sought if we are to make political and ontological progress.
I will end with a quote from Jenny Morris (1992) that I think encapsulates the
intended message of this chapter:
To experience disability is to experience the frailty of the human body.
If we deny this we will find that our personal experience of disability
will remain an isolated one; we will experience our differences as
something peculiar to us as individuals – and we will commonly feel a
sense of personal blame and responsibility.
(Morris, 1992:164).
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Disabled or Not Disabled? That is the Question….
Paradoxically, through denying our right to express personal, psychological
and emotional experiences, and through the disembodiment of
contemporary disability discourse, it seems like we have ended up right back
at the start – with a “sense of personal blame and responsibility”
characteristic of the medical or individual model.
This chapter has attempted to weave theoretical perspectives around the
experiences of myself and my participants, concurring with the need
identified by feminist disability scholars for the extension of the social model
of disability to include psycho-emotional dimensions of disablement and the
valorisation of personal experience. The body can be said to have been
exiled from discussions about disability as the social barriers were
emphasised, to the exclusion of effective engagement with the realities of
impairment. I have tried to maintain that the reappearance of the body into
disability discourse is essential if we are to include the experiences and
voices of people with non-apparent disabilities.
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Disabled or Not Disabled? That is the Question….
ANALYSIS CHAPTER 6: THE POLITICS OF VISIBILITY
Many of my participants identified the in/visible nature of their impairments
to be a crucial factor in the way they were approached, accommodated and
accepted. As such, this is to be the subject of my next theme, although as
before the issues addressed in the previous and subsequent themes will
impact and converge upon each other.
As was discussed in my introduction, when non-disabled people envision
‘disability’, they think of wheelchairs, white canes, hearing aids, sign
language on the television – all tools that some disabled people use to
support their participation in a disabling society (Lightman et al., 2009). This
obsession with visibility has led people with disabilities that are not
immediately apparent to be subject to disbelief and suspicion, and the
misguided notion that these disabilities are not ‘real’ or ‘can’t be that bad’ –
perhaps even amongst the disabled community themselves. This
categorisation of people into able/disabled is a clear demonstration of the
binary thinking characteristic of individualism, and assumes that being
disabled is a matter of either/or, and nothing in-between. The following
section of this theme, identified by my participants, is an exploration of the
perceived ‘hierarchies of impairment’.
6a: Hierarchies of Impairment and Questions of Legitimacy
Although we may understand disability differently than others do, we
have not, as a group, abandoned the suspicion of people who may not
be “really” disabled, who may be “slacking” or “faking” or encroaching
on “our” movement and “our” successes. And we respond to people
who challenge our ideas of what disabled people are “really like” just
as non-disabled people do: with suspicion.
(Montgomery, 2001:2).
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Disabled or Not Disabled? That is the Question….
This disclosure comes from Cal Montgomery who, in her own words, “is
invisibly disabled. Or so she’s told” (Montgomery, 2001:1). She is discussing
disabled people’s attitudes to people with “invisible” disabilities, and
concluding that a much deeper level of understanding is needed if injustice is
to be truly challenged.
Donna Reeve (2006) has written eloquently on this subject, common
amongst most marginalised groups .This refers to the process whereby
people attempt, consciously or subconsciously, to rank themselves in relation
to other members of the marginalised group. Studies (Deal, 2003, Reeve,
2004) have noted that this marginalisation appears to occur with disabled
people with regard to their attitude and discriminatory behaviour towards
other groups with different impairments. Individuals with impairments that
are perceived to be lower down in the ranking (with wheelchair users being
the top, and disabilities that are not immediately apparent to be towards the
lower end) may not be believed or believe themselves to have a ‘real’
disability. This can have a profound impact upon their self-definition as
disabled. This is a theme emerging directly from my data; I had not
anticipated that this would emerge as a significant issue, although it does
have very strong links to self-identity. It can lead to people with non-apparent
disabilities fighting very hard to get their needs met, as the narratives of
Mandi, Matthew and Jacqueline show (discussed in
Chapters 4 and 5). For
example, when Jacqueline was talking about her experiences with ADHD and
asthma, she recounted how asthma, because “a lot of people have it”, does
not have the same stigma associated with it: “What confuses me is that
people don’t see the asthma as a disability…it doesn’t seem to have the
same connotations that ADHD does. I think maybe because people don’t
understand it (the ADHD)”. Also, the asthma is a visible, tangible impairment
– the general public know what to expect with it. I asked Jacqueline whether
the invisible nature of her impairment had an effect on her treatment, and
her response to this was,
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Disabled or Not Disabled? That is the Question….
Oh yeah, definitely (pause). I think that there’s visible signs when the
asthma’s going out of control, people can see that my lips are turning
blue or whatever. Carol was very calm the other day, “Jacqueline you’re
turning blue” (laughs), no-body fusses.
Asthma, although as Jaqueline says does “put her in bed for months at a
time”, is not seen as a disability and is therefore more socially accepted.
Indeed, as Humphrey (2000) notes;
The propensity to treat only tangible impairments as evidence of a
bona fide
disability identity clearly marginalises those with non-
apparent impairments…whilst the reluctance or refusal to differentiate
between impairments by identifying them bolsters up claims by people
with apparent impairments that they represent all disabled people.
(Humphreys, 2000:67).
For conditions that do not show many visible signs of dis/ability like M.E, the
invisibility of it has serious implications as to whether the effects (and
affects) are taken seriously or not, and can influence questions of legitimacy
from the self and others.
With conditions like M.E, Matthew reports that there is still a lot of ignorance
surrounding the condition:
When I was first diagnosed, even doctors were very dismissive – they
knew nothing at all about it. Many had not even heard of it. As an 11
year-old child that had a big impact because I considered doctors to be
an authority figure and know everything so that made me question
myself really.
As is evidently the case with Matthew, the non-visible nature of M.E causes
his identity as a disabled person to be called into question, even by himself.
The argument here is that we need to incorporate a wider stance to
in
clude,
rather than
ex
clude, all those who self-define as disabled. Questionable and
questioned identities can leave people in a state of flux, with people “not
knowing where, or whether they belong (Humphreys, 2000:74). The
reactions of those who occupy a position of power, such as health
professionals, have a significant bearing on the self-identity of people with
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Disabled or Not Disabled? That is the Question….
disabilities. Jacqueline recounts her difficulty getting help as an adult with
ADHD:
I was 38 when I was diagnosed. I think I was glad to have the diagnosis
because then I had to fight to get help because erm it’s seen as a
childhood problem and it’s very difficult to get help as an adult. I forgot
that I had an appointment and didn’t turn up so she struck me off the
waiting list and I had to wait over a year. Forgetting appointments is
the thing I needed help for!
As Jacqueline and Matthew show, the mis-recognition of disability can cause
extended frustration and distress for those with disabilities that are not
immediately visible. This can occur even amongst health professionals, and
when it does, that especially calls us to question our legitimacy. This mis-
recognition can also occur with physical disabilities when the impairment is
not immediately apparent to the outside observer, as Amal (who has polio)
illustrates:
When you go on the bus and show your disability card, the bus drivers
look at you like, “where are you disabled?” They need to actually see it.
You should have something, a walking stick or wheelchair, and that’s
the only time you’re physically disabled. And the card is not enough, do
you have to wear, you know, a hat “don’t ask me if I’m disabled, see
how I walk… If you’re looking for my disability, keep looking as I walk
away” (laughs).
Amal succinctly highlights the preoccupation with visibility that is the subject
of the next section, but for now I wish to focus on the hierarchies of disability
amongst disabled people themselves.
Assumptions about impairments, and the people who have them, are closely
bound with prejudices and discriminatory attitudes held not only by the non-
disabled but also by disabled people towards each other through
internalising negative and oppressive cultural images of disability (Deal,
2003). The dilemma of identity that can be reached from the dis-
identification with disability can be due to internalised oppression, wherein
people with (non-apparent) disabilities can internalise negative assumptions
and images of disability and disabled people, and not see themselves as
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Disabled or Not Disabled? That is the Question….
fitting in with that image. This, as I tried to illustrate in Chapter 5 can lead to
significant internal dissonance as individuals attempt to integrate the
opposing (according to the dualistic thinking characteristic of our society)
visions of themselves, potentially fracturing the fragile self-concept. For
example, Jacqueline is keen to separate herself and her disability from
‘normal’ disability, stating that her disability is instead a “neurological
difference” that wouldn’t be a disability “if there was a bit more
understanding”. Mandi does not see herself as disabled because she
arranges her life in such a way that she is not dis-abled. For example, she
works from home at a pace that suits her, leaving her the space that she
needs in order to get sufficient rest so that she doesn’t feel dis-abled – she is
“able-bodied in her own context”. However, she does receive Disability Living
Allowance, making her feel guilty (“hardly anybody knows that I’m on this…
It’s dangerous to admit it, it feels shameful…”) contributing to the internal
dissonance or ‘splitting’ of herself, relating back to the theme of Chapter 5b.
The problems caused by the ‘invisible’, ‘hidden’ or ‘non-apparent nature of
the disabilities experienced by my participants and I are often due, not to the
actual impairment
per se,
but to the ontological insecurity and uncertainty in
the reactions of both non-disabled and disabled others. As Jackson (2004)
illustrates; “Missing legs, cancer and pacemakers would provide a pass out of
this ontologically liminal space and into one which patients’ condition, and
their selves, are more legitimate” (Jackson, 2004:345). Whilst I do not whole-
heartedly agree with this statement, the message is that if their conditions
were more visible, they would not feel this sense of double marginalisation.
6b: Not what it says on the tin!
“The visual field is said to occupy a highly privileged position in modernity. It
is commonly assumed that to see is to know, that vision categorises
objectively and innocently (Lingsom, 2008:3). Yet the narratives of this study
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Disabled or Not Disabled? That is the Question….
are testament to the contrary, highlighting that what you see is not always
what you get. Problems arise when the visible indicators of an identity come
to be the definition of that identity, and thus treats with profound suspicion
those whose visible identity does not ‘fit’ (Kooistra, 2008; Samuels, 2003).
At times, such as when I’m travelling alone, I ‘perform’ my disability –
accentuating my limitations by, for example, wearing a hand and wrist
support – a ‘badge’ of my disability. I find that, when I do this, I receive much
more compassion and understanding. Although, ‘performing’ disability in this
way fails to call into question the very primacy of the visual, and does
nothing to motivate the deconstruction of society’s reliance on what we can
see, hear and objectively measure.
In this example, I am actively shaping the in/visibility of my disability to
strategically manipulate how others perceive me. The narratives of each of
my participants also attest to this: I refer the readers’ attention back to
chapter 4 where we saw how disabled people have to “deeply pathologise”
(Goodley, 2011:724) themselves in order to receive benefits.
Matthew’s narrative takes this notion further, recalling how it is often his
‘responsibility’ to explain his condition;
They have a tendency to believe what they can see rather than what
they’re being told, and it’s quite a difficult illness to describe to people.
Even after twenty years or so I still find it hard to get across the key
points and try to give people things they can relate to.
This obsession with the visual at the expense of other information may relate
back to the scientific thinking characteristic of most of the last century, and
is thus an outdated hegemonic ontology.
Amal furthers this notion of educating people who are showing
discriminatory attitudes. She relates an account of her being refused a ‘blue
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Disabled or Not Disabled? That is the Question….
badge’ (necessary for parking and transport) on account of her not providing
a letter from her doctor. “I did complain, I wrote to her and actually said,
‘You’re discriminating against me because you’re not taking my opinion as a
disabled person on board’”. She received not only her blue badge, but also a
letter of apology from this woman! Amal is not afraid of standing up for
herself, but this is not always the case for disabled people. I, for instance,
find it very hard and rather painful emotionally to verbally articulate my
disability in a way that is objective and ‘clinical’ and therefore
understandable to others. Employers in my past have been able to ‘cope’
with my physical disability because I have shown, through a process Goffman
(1963) refers to as ‘covering’, that I can do most things with only my left
hand. The cognitive disability, on the other hand, is extremely difficult for me
to convey, and problematic to accommodate. I have what could be referred
to as aphasia, where I often forget words or phrases, and I’ve been told that
having a conversation with me is tedious and excruciatingly slow. On paper I
can express myself because I can think about what I need to say, and on
appearance I am a ‘normal’ woman, but on deeper exploration what you see
isn’t always what you get.
My participants now lead me on to the complex subject of disclosure, but I
would like the reader to return momentarily to the subject of visibility for a
fantastic comment from Amal: “You don’t need to ask us to walk or have an
epileptic fit in front of you to recognise us as disabled people… the general
public needs to be trained more than disabled people!”.
6c: Dilemmas of Disclosure: To Reveal, or Not to Reveal?
For me, public disclosure can often feel like I’m allowing someone into a very
private, vulnerable space where their reactions and acceptance (or not) of
me as a person strikes me at the very core. My participants reported similar
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Disabled or Not Disabled? That is the Question….
feelings of dilemmas of disclosure. All of my participants divulged difficulties
in the workplace to be significant issues for them. Matthew and Mandi, as I
discussed earlier, have chosen to override this problem by working for
themselves which is a creative solution to a complex problem. Matthew
states,
I’ve been limited to working at home for myself, there’s just no way
could I do a nine-to-five job, I can’t work for a period as long as that…
in public spaces that are quite noisy or brightly lit, all those cause more
fatigue and exhaustion. It’s like sensory overload.
Mandi echoes this sentiment, stating “Every single job I had loads of time off.
Sometimes I’d feel really guilty because I thought I was being really lazy but
actually I was just exhausted all the time”. Mandi was careful to assure me
that she did have a number of jobs which she greatly enjoyed but could not
sustain. Working at home, she recounts, at a pace which suits her, is much
more conducive to her condition. “I love my life, the way I’ve organised it”.
Jacqueline, however, encountered different instances of discrimination at
work. She describes a particularly troubling time when she disclosed her
ADHD to the school she had been doing supply work for for three years.
They didn’t call me back in once after they found out. I needed to do
my CRB check (I’ve been doing it for the last 20 years) and it’s the first
time somebody said that I needed someone to sit with me to fill it in
(laughs). Obviously I suddenly became incapable and maybe not to be
trusted – I think there’s that element in ADHD that you’re trouble
(laughs).
Jacqueline describes beautifully the point made in Chapter 2 by Galvin
(2010:143) the notion of being ‘relegated’ to a marginalised position in
society, purely by
disclosing
her disability, not by having one. Suddenly she
is demoted to the position of in-valid. Similarly, I have experienced difficulty
on disclosing my disability. The job I applied for was Reading Specialist, and it
involved giving phonics lessons to a class size of 8. This, I thought, was well
within my remit and skills. On successfully securing the job, it became
apparent that we would need to use both hands to signal the separate
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Disabled or Not Disabled? That is the Question….
phonemes. I had not made any secret of my disability; but there was no-
where to state it on the application form, and I foresaw no areas within the
job that this would be an issue. Nevertheless, on the induction I queried
whether a fist shape would be sufficient instead of a flat hand to signal the
break in the phonemes. Prior to that, no-one noticed my hand. From then on,
my disability became a massive issue, with the head manager coming to
‘observe’ my classes on a regular basis and although I greatly enjoyed the
work, I was glad to leave the workplace. As was referred to briefly in Chapter
2, people with identities that are not immediately apparent face complicated
decisions over when, whether and how much to disclose. The fact that this
option is available to us is often seen as a highly enviable position. Perhaps
rightly so, but the issue of visibility means that people like Mathew, Mandi,
Jacqueline and Amal often have to prove that they are who they say they are.
The belief that we have been devious, secretive in our ‘silence’ about our
disabilities is, I feel, significant and contributes to the undermining of our
self-worth.
6d: Labels and Discrimination
The final section of this chapter will discuss the usefulness of labels. This was
a complete surprise to me; I thought having a ‘label’ signalled the person out
and enhanced their Other-ness, and thus was always a bad thing. Not so, as
the narratives of my informants shows.
The use of labels often creates unhelpful stereotypes and biases, can often
serve to ‘lump’ people with a diverse range of experiences together, and
maintains some people’s inability to separate the disability from the person
(Partington, 2006). The use of labels can override the individual’s innate
humanness, and are frequently imbued with terminology which disempowers
disabled people.
However, the acquisition of a label can sometimes serve to
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Disabled or Not Disabled? That is the Question….
empower,
as this means that, for example, access to accommodations
becomes available. We can find a particular example of this by looking at
Jacqueline’s story;
The ADHD diagnosis had a really positive effect on my view of myself. I
stopped looking at myself through that negative lens and started
seeing the problems I had as ‘just my brain’ and that helped a lot. I
stopped trying to ‘work harder’ to fight the difficulties, and started
trying to learn how to work with my strengths.
For Jacqueline, the label aided her to accept and start to integrate feelings
and behaviours that she had previously ‘othered’. It also gave her the means
to challenge the negative labels that she had previously taken on, like ‘lazy’,
‘difficult’, ‘trouble’. Jacqueline feels glad to have the label as it has helped
her connect with other groups (the benefits and drawbacks of which were
discussed in Chapter 5).
Sometimes, the medicalisation of disability can be a benefit to disabled
people. In our culture, we have grown accustomed to separating our bodies
from our minds/personalities. In Jacqueline’s example, the medical label
allowed her to separate her disability from being a personal attack on her
and her skills (thus imbuing her with a negative self-perception), to it being
‘just my brain’ – a part of the body that she could seek to control.
I will end this chapter with a succinct quote from Kooistra (2008:12):
The problem with visibility is not that it holds a privileged position, but
that it is an exnominated part of the social moral code. The visual
emphasis is paradoxically invisible; it needs to be spoken into sight if
its dominance, along with the oppressive outcomes of this dominance
is to be challenged.
In this chapter I have tried to deconstruct the unquestioned obsession with
visibility in our culture. This obsession has far-reaching consequences – by
inscribing a ‘normative’ standard onto everyone’s bodies, we marginalise
those bodies that do not meet this mysterious ideal. The obsession with
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Disabled or Not Disabled? That is the Question….
control over the body’s size, weight and appearance leads to assumptions
made about the people who inhabit these bodies. For people who don’t
appear to have a recognisable disability, this can lead to questions of
legitimacy, even amongst the disability ‘community’ themselves. This in turn
can lead to questions about self-defining as disabled. As I pointed out earlier,
having to constantly draw attention to impairment brings another dimension
to the experience of disability, potentially leading to frustration, self-doubt
and internal dilemmas. The very act of disclosing can bring about intensely
personal feelings as you fall again into disability (Chandler, 2010).
I have made continuous reference throughout my analysis to the concept of
‘passing’ and the corresponding effect on identity but have not as yet
attempted to fully discuss this. My reluctance could be because the concept
correlates so closely with my situation, and I find it touches me in ways that
both resonate with me and make me feel incredibly guilty; or it may be
because it signals that the compelling, stimulating and emotionally
challenging process of writing this study is coming to an end. Nevertheless, it
is time to discuss the final theme in the participant’s narratives: that of non-
apparent disability and identity.
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Disabled or Not Disabled? That is the Question….
ANALYSIS CHAPTER 7: DISABLED, OR NOT DISABLED?
This, I thought, would be one of the most crucial themes in the thesis, and
one where the participants would furnish me with an abundance of material
with which to construct an elaborate tapestry. Perhaps this is where my bias
shows through, however, with my own self-perception constantly flitting
between the non/disabled divide. Be that as it may, there were some
references to a liminal state of being, and this chapter will start to explore
notions such as whether the onset of disability has an effect on adopting a
‘disabled’ identity (if indeed there is one); the complex, conflicting and often
deeply emotional concept of ‘passing’; and the nuances in ‘disability pride’.
7a: The Onset of Disability and the Effects upon Identity
...People who acquire impairments, whether it be through sudden injury
or accident or the gradual encroachment of chronic illness, are faced
with identity crises or ‘biographical disruptions’ (Bury, 1982) which are
directly linked to the social construction of disability as an inferior
status.
(Galvin, 2003: 149).
In Chapter 2, I took a social constructivist approach to discuss the possible
reasons why disability occupies an ‘inferior status’. Now I wish to draw the
reader’s attention to the concept of identity and the possible ‘disruptions’
that the onset of disability causes.
Much of the relatively scant literature around the onset of disability focuses
on the rehabilitation process and the ‘road to recovery’, thus negating the
significant emotional and psychological impact that the shift quite literally
from one ‘world’ to another necessitates. Likewise, much of the psychological
literature concentrates on the medical model-esque ‘personal tragedy’, loss
of self, and the return to a state of ‘normality’ (See Livneh & Sherwood,
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Disabled or Not Disabled? That is the Question….
1991; Crisp, 2002; Marks, 2002; Gelech& Desjardins, 2010). As I discussed in
Chapter 5c, this view can be helpful particularly in the immediate aftermath
of an accident or illness, but becomes less so as time progresses as the
tendency is to lay the blame for unsuccessful recovery firmly onto the
impaired person’s shoulders. For the person in question, then, maintenance
of even a modicum of self-worth, self-respect and self-esteem after the
onslaught of this individualist thinking necessitates a complete overhaul in
the way of thinking about oneself. This is a monumental task; one that
requires a re-evaluation of the very foundation not only of your thinking, but
also a re-structuring of the attitudes and behaviours of your loved ones
towards you. It necessitates a thick skin, to shield oneself from the
disparaging way in which you are treated by many (but thankfully not all)
people whom occupy a more dominant position in society. I am just starting
to realize that this is the task ahead of me.
Others, however – Susan Wendell in particular, have experienced what Galvin
(2005:394) terms as “epiphanic experiences” in relation to self-identity.
Wendell writes, “people with disabilities have both knowledge and ways of
knowing that are unavailable to the non-disabled” (Wendell, 1996:5). I feel
that my experiences with/in disability have given me insights into a radically
new way of thinking, and have enabled me to have a greater level of
empathy with other marginalized groups. I have in fact gained a great deal
from my experience of living with a disability. If this kind of knowledge was
counted and acknowledged, Wendell (1996) notes, then “it would enrich and
expand our culture, and some of it has the potential to change our thinking
and our ways of life profoundly” (Wendell, 1996:67).
An interesting feature emerging from the data was that the age at which my
participants acquired their disabilities seemed to have a direct correlation to
their acceptance and integration of it into their identities. For example, I
asked them to describe their ‘condition’ to me because I did not want to lead
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Disabled or Not Disabled? That is the Question….
or direct them to refer to their dis-abilities
as
disabilities if they themselves
did not see it in that way. Amal, who had polio at age 5, immediately replied,
“What, you mean my disability??” She stated, when asked if she would
classify herself as disabled,
Yes I would, not because I’ve got registration and, you know, a blue
badge, but because I
know
I’m disabled and that’s all that matters. It
doesn’t make any difference to me whether I was, I don’t know
anything else other than being disabled.
This has been part of her identity throughout her life, and so perhaps has not
required so much of an ‘emotional adjustment’ to integrate disability into her
way of being. Similarly, Matthew was diagnosed at age 11, an age at which,
according to most psychological theories of development, we have just
begun to form our personalities and identity. I am well aware that there are
many other psycho-social and familial factors at work here, but perhaps the
‘biographical crisis’ encountered at this young age contributed to his
immediate self-definition as disabled. Jacqueline, Mandi and I all came to
disability later in life, and I believe we don’t have as full an integration of the
‘othered’ part of ourselves as Matthew and Amal do. Or maybe I’m
interpreting the data wrongly. I for one seem to flit back-and-forth between
identifying, and then not identifying, as disabled. This leads me on to the
next theme, the contentious concept of ‘passing’.
7b: Passing
This concept has been explored by many writers (Samuels, 2003; Lingsom,
2008; Pilling, 2013; Valeras, 2010; Titchosky, 2001; Wendell, 1989; Triano,
2004) and is something that I am personally guilty of. As was discussed in
Chapter 2, this can lead to a profound sense of internal dissonance (Samuels,
2003).
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Disabled or Not Disabled? That is the Question….
Passing is a term common to marginalized groups.
In terms of disability, it
refers to a conscious suppression of the impaired parts of oneself in order to
assimilate with the dominant culture. There are many reasons that impaired
persons may wish to do this, especially when it comes to fielding off rude
and intrusive questions from strangers. For example, when asked if I have a
sore throat by people who I am not likely to ever meet again, I nearly always
say, resignedly, ‘yes’. This, I find, is far easier than going into the full
explanation of how the incubation procedure damaged my vocal cord, and is
a much more socially acceptable way of explaining my ‘spoiled’ voice
without dampening the mood. I, however, feel wretched for a good while
after the question is asked for a number of reasons. Firstly, that question
takes me straight back to the aftermath of the accident, remembering when I
had no voice at all and was unable to communicate; and secondly, is a
poignant reminder that my impairment singles me out from the activities of
‘normal’ society – participating in conversation is something that the vast
majority of people take for granted. After a comment pertaining to my voice,
I invariably withdraw. Although it may have been a well-meaning question, to
me it says, “
You
are not able,
you
don’t belong”. This causes me profound
sadness. Thirdly, my erroneous and misleading answer betrays a feeling
rising deep within my core that I should not be duplicitous in my answers to
the ubiquitous, intrusive, unthinking comments made by both strangers and
people who should know better. In this, there are feelings of guilt and anger.
Guilt for not being truthful, embracing a disabled identity and being proud of
it, and anger at the wider world for asking the question that makes me feel
all these things (we will return to anger later). It seems that the
socially
acceptable
response is to swallow all these emotions raging inside me, smile
sweetly and carry on. It is becoming harder and harder for me to do that. As
Lee (2003) states;
There are rules for passing. First, I must come up with a nice, short,
palatable, cocktail-party explanation of my disability to set people at
ease when they ask. Nothing too scary. And then, I must never mention
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Disabled or Not Disabled? That is the Question….
it again…. And I must never, ever mention the rigors of life in this body.
To do otherwise draws
their
attention to
my
otherness.
(Lee, 2003:1)
My narrative here uncovers a number of different emotions in response to a
seemingly innocent question (“What’s wrong with you, then?) that is
unfortunately a consequence of living in an ableist world (Campbell, 2008).
In responding to the question, ‘do you have a sore throat?’ in the affirmative,
I am trying to pass ‘by intent’. With regards to uncomfortable questions
about my voice, I try, like Jacqueline, not to put myself in situations where
my quiet voice might be an issue. Unfortunately this is not always possible or
indeed desirable, especially in my occasional profession as a teacher! In this
process, I am trying to minimise and suppress my disability and the effects of
my impairment. I feel that this is essential for me to progress in my career,
and yet by continuing to do this, I know that I am perpetuating and almost
legitimising discriminatory attitudes and practices that are abound in our
society (Lingsom, 2008;Titchosky, 2009; Samuels 2003). This is where
feelings of guilt arise.
7c: Pride
This leads me on to a discussion of the alternative to passing – ‘pride’. With
me, feelings of anger, sadness and frustration - at both society for not
accepting me on the basis of what I
can
do, but on the negative assumptions
of what I
can’t
do; and myself, for not being stronger, not being capable, and
not fully embracing my ‘disabled identity’ and joining in the fight for our
rights – have fuelled my sense of an ambiguous identity, not knowing where I
belong. Anger is a common theme coursing through all of our narratives, and
I believe this provides fuel for turning situations where we (I) seek to
minimise our (my) impairments into pride – effectively ‘sticking two fingers
up’ at the world which seeks to ‘other’ us.
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Disabled or Not Disabled? That is the Question….
Anger is difficult to express in terms which adequately capture the intensity
and depth of feeling that it encompasses. Jaqueline talks of the frustration
she feels that the ‘neurological difference’ she experiences is not more
accepted and seen as a
different
-ability, as oppose to a
dis-
ability. She
speaks of expressing emotional responses to situations that she believes are
“perfectly normal emotional responses… but I don’t have that block to be
able to manage it in front of other people”. I believe she is expressing
frustration here at having to conform to a way of being that is antithetical to
her own. Amal also expresses frustration at living between two cultures; one
which accepts on the surface but is seeped with prejudices and
discriminatory attitudes; and one which holds explicit derogatory attitudes
and therefore denies that she could possibly be a part of. Amal holds and
expresses anger towards a society which she feels is depriving her of her
rightful accommodations, but her feelings towards the Somalian community
are not so clear. Mandi seems to direct her anger towards the state, which
she believes to endeavor to create feelings of self-loathing and lack of self-
worth among disabled people. The main emotion coming through from
Matthew’s narrative seems to be sadness rather than anger; sadness at the
lack of understanding of the general population.
All of these feelings of sadness, frustration, anger and pride can come
together to form new identities that celebrate difference and
dis
ability, re-
claiming the word to formulate new meanings. As is the case with other
marginalized groups, words that formally held indisputably negative and
derogatory meanings, have been re-claimed by members of the marginalized
group to “locate oneself within, take up, and (re) use representations and
theories in ways that were not originally intended” (Schalk, 2013:4). This
notion helps us to think creatively about the relationship between disability
and other marginalized groups, as referred to by Shalk (2013); Samuels
(2003); Caldwell (2010; Garland-Thompson 2005; and Pilling (2013).
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Disabled or Not Disabled? That is the Question….
I draw the reader’s attention back, if I may, to the concept of pride: pride in
self-defining as disabled. This is a central tenet of the social model. Amal
immediately defined herself as disabled, but to me it seemed like she was
just stating a fact rather than exhibiting pride
or
shame. Chandler (2010)
suggests that there exists within some disabled people a propensity to feel
both, these conflicting emotions merging and fusing with each other, in the
fluidity of ever-changing identities.
As I have tried to show throughout this thesis, the dilemmas associated with
self-defining as disabled are substantial. When a person defines themselves,
or is defined by others, as disabled, they are not only accepting an insignia
of material or physical impairment, but also are “ascribed a set of oppressive
associations which stem from the hypostatisation of an abstract concept”
(Galvin, 2003:153). The very language used to describe disability (see
Chapter 2c) is suffused with negativity. It is normal to expect that we will be
judged and valued for what we
can
do, not what we
can’t
do, but the
hegemonic view of
dis-
ability concentrates on what we cannot do,
perpetually oppressing us and lowering our self-esteem. Having an
impairment does not necessarily signify a decrease in the productivity, value
or innate worth of an individual, but the values inherent in the culture of
individualism and capitalism denote that disabled people are fundamentally
and justifiably less than, inferior to the unacknowledged ‘normate’. The
construction of disability can be said to be an act of invalidation, as
Jacqueline’s narrative clearly shows (see Chapter 6c). She speaks about
automatically being de-valued, not because she has a disability but because
she disclosed it, leaving her vulnerable to discriminatory attitudes that the
mere utterance of her disability provokes. In the eyes of her workplace, she
began to take on and embody a radically different persona, morphing
overnight into an in-valid member of society.
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Disabled or Not Disabled? That is the Question….
All of my participants were subject to a degree of discrimination, and most
struggled with the self-definition as disabled. I don’t feel disabled, unless I
am in a loud environment or someone else points out my limitations.
Mandi
stated that if it were not for the personal questions that remind her of her
limitations and her need to claim DLA, she wouldn’t feel disabled. Jacqueline
indicated that her disability
need not be
a disability, if there was more
understanding. Eliza Chandler (2010) talks of similar feelings, reviewing her
experience of trying to avoid the cracks in the pavement when walking. She
relates, “Painfully I fall into disability as I am introduced to and recognised as
disability, again and for the first time” (Chandler, 2010:1). It is very strange
to feel like a member of the dominant group most of the time, to then be
reminded that there is something significant about you that singles you out,
meaning that you will not and never will be part of that group again. “Falling
into disability” is a very poignant statement, and one that truly resonates
within me. I guiltily admit to feeling like I am a member of the dominant
group, as it arouses feelings of incredible culpability and shame in me, for I
feel like I should be proudly and defiantly flaunting my disability for all to see
for I
am
disabled. Sometimes I am very proud to define myself as disabled,
and yet at times I don’t
feel
disabled. Maybe I have internalised and attached
negative connotations to the word ‘disabled’ (as many disabled and non-
disabled people do), or like Mandi I feel “very able-bodied in my own
context”. Unequivocally and solely having absolute pride in a disabled
identity can offer optimism. It can also offer the prospect of reimagining the
very concept of disability to forge new paths and new ways of occupying
disability without insinuating a devalorisation in self-concept and the
perceptions of society. This is undeniably a fantastic way forward, but may
not always be wholly realistic. As the narratives of my participants and I
show, we will sometimes crack under the weight of discrimination, the
burden of those what’s-wrong-with-you-then questions, and the drain of not
being believed – which leads to feelings of frustration, humiliation and
shame. Chandler (2010) proposes a different manifestation of disability pride
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Disabled or Not Disabled? That is the Question….
that does not deny these feelings but instead allows us to linger temporarily
in the wash of these emotions. If we disavow the powerful effects of these
feelings we risk the silencing and suppression of the voices of disabled
people yet again. Chandler asserts,
This is a call, or orientation, to a place where pride exists in
togetherness with shame rather than in its abandonment; a space
necessary for the release of stories [like these] which do not constitute
wavering bodies of pride as ‘excludable types’. Together, we can make
a pride materialise that is accessible to us all, a windy disability pride
that provokes and embraces the never-steady stories that we tell.
(Chandler, 2010:5).
The stories of my participants encompass a range of complex, often
conflicting emotions that do not necessarily fit into pre-determined, neat
little boxes but instead refuse to be contained, fixed and static. My argument
in this chapter and in the entire thesis is that we all have identities that are
fluid and ever-changing and these experiences, instead of being denied and
silenced, need to be celebrated and validated.
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Disabled or Not Disabled? That is the Question….
CHAPTER 8: DISCUSSION
8a: Summary of the Findings
I shall start this chapter by reminding the reader of my initial aims in this
thesis, and describe how far I feel I have accomplished them. My central aim
in this study was to explore the effect (and affect) of non-apparent disability
on identity, and I feel I have gone part of the way to accomplishing this
although I recognise that there is still a long way to go. My intention was to
draw attention to the unique struggles that people with a non-apparent
disability face – such as dilemmas of disclosure, disbelief, the effects of the
hegemonic reliance on the visual, questions of legitimacy and the dilemmas
of defining oneself as disabled when there are few visible signs of
impairment. I recognise that these dilemmas exist for more visibly disabled
people too, but the narratives of my participants suggests that constantly
drawing attention to impairment rather than away from it places us in a very
strange position. I wished primarily to highlight the precarious line we must
walk between dis/ability, and have tried to put forward a proposal for the
eradication of that line.
I will attempt to do this by providing a summary of the findings of this
project, stating the key messages I wish to convey. Next, I will offer some
additional concluding remarks that I believe to be important to this study.
Then I will suggest the implications of the research for disability theory, and
applications of the research in professional and policy contexts. Finally I will
reflect on the limitations to the thesis and offer some suggestions for further
study.
Chapter 4 was where I began my thematic analysis. This chapter discussed
ways in which the individualistic culture we inhabit has influenced the
propensity for people with disabilities to internalise negative attitudes and
beliefs about oneself and use these ‘facts’ to re-injure themselves. The
influence of culturally prescribed norms and ways of being, as is (hopefully)
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Disabled or Not Disabled? That is the Question….
evidenced here, is dramatic. This, as we have seen from the narratives of my
participants and I, can have a detrimental effect on the self-worth, self-
believe and self-esteem of people who fall outside of these norms.
Chapter 5 attempted to analyse the second theme identified in the
narratives: validation of experience. This looked at what is possibly one of
the main differences between visible and non-visible or non-apparent
disabilities. In order for non-apparent disabilities to be acknowledged and
accommodated, we are often forced to disclose that we do, despite
appearances, possess an embodied impairment. This adds another
dimension to the experience of disability. Wendell (1989) identified this
problem as being contradictory to the definition of disability as being socially
constructed. She proposes that in some cases it is right to focus on our
impairments as they can and do prevent us from doing things. The narratives
of my participants and I show that ignoring impairment, or side-lining the
reality of it, may serve to further silence an already marginalised section of
society. Section 5b discussed psycho-emotional dimensions of disability, and
concluded that if we adhere too much to the social model, our rights as
human beings to express our fears, anxieties and emotions about the
experience of disability may be diminished. Furthermore, the importance of
being able to share our experiences is crucially important.
One of the main challenges for people with more visible disabilities is proving
that they
can
do things against the assumption that they can’t (Triano,
2004). In many ways the opposite is true for people with less visible
disabilities, for non-disabled people cannot see anything which seems to
block our path. One of the barriers facing non-visibly disabled people is
proving that they
can’t
do something. This often leads to a mis-recognition of
the person as ‘lazy’, ‘stupid’ or ‘trouble’.
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Disabled or Not Disabled? That is the Question….
Chapter 6 discusses the non-apparent nature of our disabilities, in a culture
that relies on what we can see, measure and objectively assess. Public, and
even private spaces can be inaccessible to certain people. Access should not
be construed as solely a matter of ramps and lifts, but should be extended to
recognise other ways in which spaces are made inaccessible. For example,
Matthew needs soft light and frequent breaks to be able to work effectively,
and Jacqueline needs more divergent ways of learning to be taken into
account when pursuing educational goals. By paying attention to only what
we can see, this surely perpetuates the ‘othering’ of visually disabled people,
insinuating that what they look like will irrevocably signify their justifiable
exclusion from mainstream society. And this in turn surely contributes to the
‘othering’ of non-apparently disabled people. By drawing attention to the
strong cultural reliance on the visual, this study seeks to question what dis-
ability actually means. I suggest it means intolerance – society’s intolerance
of difference “generated by a matrix of economic, social and political forces”
(Titchosky, 2001:135).
For our accommodations and inclusion in the disabled
community to be taken seriously, the task of the non-apparently disabled
person is to disavow their ‘normalcy’. The seductive nature of normalcy
makes this hard to do, but this has been the task of my participants and I.
Chapter 7 looked at dilemmas of identity and the difficulties of allying oneself
with a marginalised group. I discussed the power of ‘passing’ for a member
of the dominant group and how I often do, until someone or something
happens that immediately removes me from the guilty pleasure that I gain
from dwelling in their lair. Passing makes me feel guilty, sad, embarrassed
and angry all at the same time. I discussed how this mixture of feelings can
come together to create something like pride, but that pride doesn’t have to
be
always
the emotion felt first and foremost. Chandler (2010) proposes a
feeling of disability pride that is not pride-instead-of-shame, but
acknowledges that these feelings can come together. Not either/or, but all
feelings, all states, all ways of being incorporated, validated and respected.
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Disabled or Not Disabled? That is the Question….
8b: Implications of the research for Disability Theory
The insistence on labelling oneself as either disabled or non-disabled,
abnormal or normal, black or white, putting oneself into pre-determined,
narrow categories serves (I believe) to perpetuate the marginalisation and
oppression of certain groups in society, as one group is identified as ‘normal’,
‘acceptable’, ‘right’ and the other represents the flip side of these taken-for-
granted characteristics. One solution of being labelled the ‘other’ is to stress
the connections between the Othered group and the dominant group, and
play on the hoped sense of humanity of the dominant group. This, I argue,
has succeeded in the marginalisation being justified, as the non-disabled
‘pity’ and de-value our existence in society. Any legal structures that are put
in place through this hierarchical view are likely to be undergirded by an
underlying sense of inherent superiority and a feeling of charity. My intention
throughout this thesis has not been to reify the medical model subordination
of disabled people but to illuminate the tensions we hold within our
identities. By listening to the voices of my participants I have, nevertheless,
focused on impairment, trying to bring the experience of the body back into
disability politics, warts and all.
If people with non-apparent disabilities come to accept and have pride in the
label ‘disabled’, we can come to dismantle narrow conceptions of normalcy
and abnormalcy and thus contribute to the emancipation of all people.
However, this may be too simplistic a view as by coming to state that we are
in
disability rather than
out,
surely this is conforming to the binary structures
that are already in place without questioning the very need for these
divisions?
I propose that what is needed is a radical overhaul in the structure of society,
to question our reliance on the visual – what we can see and objectively
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Disabled or Not Disabled? That is the Question….
assess –and more of an appreciation (if not a realisation) that selves are
constantly changing, moving, morphing from moment-to-moment and the
desire to place human beings into static, fixed boxes is arbitrary and
meaningless. We need therefore to question the structures of normalcy that
seek to place people into distinct categories of either/or and recognise the
existence of all the beautiful, wondrous shades in-between.
My argument is that we need to deconstruct, obliterate or at the very least
question the need for and usefulness of binary divisions in our society.
Binaries, as we know, serve to deepen inequality and in their creation,
perpetuate the dominance of one group over and at the cost of others. In this
study I have tried to argue for the dissolution of the dis/abled divide to
incorporate new ways of understanding in which the skills, knowledge and
experience of all of us is valued, cherished and appreciated.
8c: Applications of the Research in Professional and Policy
Contexts
As I have tried to show, for the implications and recommendations of this
thesis to truly take effect, to seep into the foundations of society, we need a
radical overhaul in our collective ontology – to begin to question our need
and tendency to place people into distinct categories and thus measure and
rank them against an unacknowledged norm or standard. This will require a
fundamental, deep-seated re-assessment of our way of being in the world.
This will not happen overnight; but what I propose we can start with is a
change in the policies and practices of employers, to recognise non-apparent
disability and thus to incorporate the necessary procedures for
accommodations without devalorisation. To recognise that some people need
to work in different ways in order to be ‘productive’ members of society.
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Disabled or Not Disabled? That is the Question….
There needs to be less of a reliance on what we can see and (theoretically)
objectively measure, and a turn more to an increased tolerance of difference.
Governments need to be more recognisant of fluctuating health conditions in
state financial provisions. With regards to the disability community, I feel
that we need to be assured of more of a consensus and acceptance within,
before we can begin to affect change without, and so this research is
primarily aimed at the disability community and disability discourse, where
the aim of this research is to open up a space for the ones that have hitherto
fallen in-between.
8d: Reflections and suggestions for further study
As I am inherently part of the study, there was potential for the emotional
nature of the research to have a detrimental effect on me. The emotionality
can be an immense benefit and a challenge of the research, and there was a
danger that I would be overwhelmed by the study as it pertains to some
deeply emotional issues. It did indeed challenge me and cause me distress. I
attempted attempt to minimise this by allowing myself regular breaks from
the research so I could re-enter it with renewed energy and vigour. This
worked, and I found myself energised and invigorated every time I came to
write.
I felt that the interviews may have gone better if I had done some kind of
trial session beforehand, to re-define my questions. However, I felt that doing
this may bias and direct the narratives, and I wanted to gain immediate, non-
directed responses. All of the emotional responses to acts of discrimination,
covert or explicit, deserve a much greater exploration than I have space for
here, and would require a much deeper interpretive interview that I allowed –
more akin to a counselling session or series of sessions. Because I was hyper
aware of the possibility of blurring my boundaries by making the interview
into a counselling session, I tried to steer my questions away from too many
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Disabled or Not Disabled? That is the Question….
ambiguous responses. To the study’s detriment, I feel; I may have achieved
far richer data if I had allowed the interviews to continue for longer and
asked more personal, in-depth questions.
There have been a few suggestions I have made for further study in this
area. One of the major ones is with recruiting participants; I feel if I had more
resources and time I could have explored this subject in the depth that it
requires. A more anthropological bias would look more closely at the
influence of culture on attitudes to non-apparent disability, and a socio-
economics focus would look at the employment situation –both of which
would be interesting. A more detailed exploration of the benefits of
intersectionality would also be useful.
Word Count: 2346
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Disabled or Not Disabled? That is the Question….
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