Barriers to Success? Disability Identity in Higher Education
Charlie Panting & Katie Kelly
Paper presented at the 1st Pedagogical Research in Higher Education (PRHE)
conference "Pedagogical Research: Enhancing student success", 2-3 May 2006,
Hope University, Liverpool
Summary
This paper examines how students with hidden impairments, from two different
universities, negotiate their disability identity. Drawing upon data taken from semistructured interviews with eleven students, this research considers how the disability
identity can affect students’ learning experiences within higher education (H.E.). This
paper considers what the term ‘disability’ means to students with hidden impairments
and how they negotiate a disability identity to suit their self-perception, their
relationship with their peers and their ability to access institutional support. This
paper also illustrates how stereotypes and stigma can prevent students from disclosing
an impairment in addition to affecting a student’s desire to adopt a disability identity.
This has been found to have negative repercussions on the student’s help-seeking
behaviour as the student negotiates the possible negative responses to disclosing an
impairment, with the possible positive consequences of receiving the appropriate and
required institutional support.
Introduction
There has been an academic explosion in recent years surrounding the concept of
identity. Individual’s identities are increasingly fragmented and multiple (Hall, 1996)
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yet the scope for agency within identity formation is limited by prevailing power
relations and struggles that help create boundaries of ‘difference’ (Hall, 1996).
Bauman illustrates how identification is a powerful factor in stratification. Due to
imposed and enforced labels and identities, some individuals are burdened with
stigmatizing identities (Bauman, 2006). Such stigmatizing identities are often
reinforced in the media, education system and other institutions, and subsequently
naturalise the existence of such labels and identities (Hall, 1996; Smart & Smart,
2006).
Smart and Smart (2006) blame the ‘medical model’ approach to disability, which
teaches individuals that to be disabled means a person is defective and restricted. This
encourages society to accept stereotypical labels, which subsequently encourages an
inferior stigmatization and discrimination.
Therefore, from a medical model
perspective, a disability identity, or to be identified as a disabled person, is a negative
identity marker. It signals a personal defect or lack of worth.
Galvin (2005) found that an imposed disabled identity could create a downward
exchange in social status. Moreover, Deal’s (2003) theory of hierarchies of
impairment, has revealed that, in some cases, those with the most physically
restricting and degenerative impairments at the top of a hierarchy are considered by
others to be ‘genuine’ disabled people (Deal 2003: 898). The less physical and visible
a person’s impairment, the further they would fall down this hierarchical structure.
Goffman (1963) hypothesised that many people with impairments will try to hide
their impairments as much as they possibly can to avoid being stigmatized.
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Breaking the mould of the emotional, social and structural restraints imposed upon
individuals by the medical model, the social model challenges assumptions about
disability (Barnes, Mercer, & Shakespeare, 1999). The social model of disability was
developed within the disability movement by disabled people and challenges negative
connotations. According to the social model of disability, a person has an impairment
but the experience of disability arises through societal restrictions, both physical and
attitudinal (Oliver 1996). It is not people with impairments that need to change or
adapt, rather the physical and social environment needs to change as it is physical and
social barriers that quite literally disable people with impairments from participation
in society. Within the social model, to describe oneself as a disabled person and
therefore adopt a disability identity is reversed from the negative, passive
understanding of the medical model to a positive and active role. In the social model,
the disability identity is a position of strength, actively challenging society’s attempts
to disable people with impairments and prevent their active participation in everyday
life. Above all, the social model endows disabled people with the authority to define
themselves and their relationship, thus disabling barriers rather than being passive
recipients of care or intervention (Barnes et al. 1999).
Olney and Brockelman’s (2003) research gave university students with apparent and
hidden impairments the opportunity to evaluate their own identities. They discovered
that the students in their cohort with hidden disabilities often distanced themselves
from the label of disability and tried to conceal their impairments. The disabled
identity was however, negotiated when students required access to academic and
pastoral support. Olney and Brockelman (2003) found that students perceived that
both staff and their peers could be sceptical about their disability status as their
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impairments were not necessarily apparent or visible in the way physical or sensory
impairments can be. Disclosure often led to students being treated differently, either
through disbelief or sympathy. Subsequently, students tended to operate on disclosing
their impairment(s) on a need to know basis.
The research discussed in this paper also focuses on students with hidden
impairments. It considers what the term ‘disability’ means to students with hidden
impairments and how they negotiate a disability identity to suit their self-perception,
their relationship with their peers and their ability to access institutional support. One
of the aims of the research that this paper draws upon is to empower the disabled
student by centralising their experience of disabling barriers in H.E. Participation of
disabled students in H.E. is an issue of empowerment as well as equal opportunities,
and despite the growth in interest in widening access, participation and inclusive
education, the opinions of disabled students remain predominantly unheard (Fuller,
Bradley & Healey, 2004).
The research in its wider context
The disability identity is just one of the emerging themes from an on-going research
project exploring disabled students’ experiences of teaching and learning in H.E. This
longitudinal and comparative research project, funded by the Economic and Social
Research Council’s Teaching and Learning Research Programme ESRC/TLRP), aims
to understand how disabled students’ academic performance and experience of
teaching, learning and assessment varies by disability, the subject studied and the type
of institution. The research also aims to understand how the students’ experience
develops during their degree course and how their learning outcomes compare with
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those of non-disabled students. The research subsequently considers the student
experience, the subject culture and the institutional culture.
Method
This research is undertaken at four universities within the U.K. and each university is
following a cohort of students throughout three years of their degree course. All
disabled students in this study volunteered to take part. Each university undertakes biannual semi-structured interviews with selected students, bi-annual observations of a
teaching and learning scenario as recommended by the selected student, semistructured interviews with the member of staff whose teaching was observed, and
semi-structured interviews with key informants.
The data in this paper have been taken from the semi-structured interviews with the
cohort of students in two of the four universities. Data have been extracted from
students with hidden impairments only in an attempt to understand what the term
‘disability’ means to students with hidden impairments. Fuller et al. (2004) noted that
dyslexia was the most commonly declared impairment in higher education followed
by other hidden impairments such as epilepsy, diabetes and asthma. Students with
other impairments such as mobility difficulties or mental health difficulties for
example, accounted for less than 5% of disclosed disabled students.
Main findings
Although all students with hidden impairments in this study volunteered to take part
as disabled students, their relationship to disability is not so straightforward. Early
analysis of interview data from students with hidden impairments illustrates that most
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of the students have a tendency to conceptualise disability as a physical phenomenon.
The students we have talked to do not reject a disability identity because they perceive
it to be something negative. Rather they perceive disability as predominantly physical,
permanent, and something which affects all areas of life.
to me, disabled is somebody who can’t walk or something like that, I
don’t have anything wrong with me, I’ve just got a learning problem
rather than a disability
(student with dyslexia)
Disability, in my eyes is more sort of being in a wheelchair or sort of,
not being able to speak, something that sort of stops you from doing
things on a daily basis, that a normal person [sic] would be able to do
(student with dyslexia)
Many of the students however, tended to contradict their assumption that being
disabled implies a physical impairment when they were asked to consider how their
own impairment fitted into their own identity. It became apparent that their disability
identity was indeed part of their self-identity. Some of the students considered it a
positive attribute. Others considered it to be a neutral characteristic or an imposed
characteristic. What emerged was the students’ acknowledgement that they were
disabled, but, supporting Deal’s hierarchy of impairments (Deal, 2003), they did not
consider themselves seriously disabled and did not consider that disability critically
dominated their overall identity.
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I don’t particularly mind it [label of disability] but I don’t sort of think
its really appropriate for, kind of, for dyslexics, personally, because
they’re not exactly that disabled, you know
(student with dyslexia)
I joke about it… umm, dyslexia moment kind of thing … its who I am,
its part of me, but I’m proud of the fact that I am dyslexic ‘cause I
think it makes me a better person
(student with dyslexia)
It’s something I’ve come to accept because I don’t really see myself as
disabled but other people do, so I’ve come to accept it, I’m going to
get myself, like there’s the label of disability and disabled and that’s
what people are going to see me as so I’m going to be labelled
disabled. But, I’ve come to live with it because it does have its
disadvantages now and again, I prefer to be without a label if I could
(student with epilepsy)
For many of our students, particularly those with dyslexia, their impairment is context
specific or fluctuating. Therefore, they do not feel justified as describing themselves
as disabled, as most of the time they are not. When talking about their own
impairments, students’ descriptions focused on particular support needs or specific
issues. This somewhat challenges a concept of a holistic disability identity as
proposed by the social model of disability, as the students aren’t embracing a single,
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fixed disabled identity but rather are negotiating a disabled identity as a small part of
their lives.
I would probably describe myself as being in the slow readers group at
school or something like that. But I wouldn’t say, if someone asked,
‘hello, my name is …. I’m dyslexic
(student with dyslexia)
I wouldn’t like to think of it as my main identity, I prefer to think of
myself as the jolly lad that sort of goes round all the time. But, if
people see me as ‘that chap’s got epilepsy’ then that’s the way they see
it
(student with epilepsy)
For most of the students in this study, the main purpose of a disabled identity was to
access support.
No, it does give you access to all sorts of things because if you don’t
say ‘I’m disabled’ you don’t get the support. You have to understand
that you need the support in order to get where you want to be.
Otherwise, if you don’t have any support then you would find it
impossible to do anything, like Uni-wise
(student with multiple impairments)
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I do describe myself as a disabled student, when my mates and stuff
ask, it’s like, how did you get this and how do you get the extra time
and stuff, that’s how I describe myself, but that’s not how I describe
myself out of university
(student with dyslexia)
Some students were unaware about the range of support available to them. Though all
of our students are in contact with their disability office, many are not accessing or
even aware of the full range of support available. For example, one student with a
hearing impairment has had no support through two years of study, despite the fact
that she relies on lip reading, which can make note taking during lectures difficult as
she cannot write and hear the lecturer at the same time. At her university the onus is
on the student to approach the disability office for support – yet many students have
commented that they cannot ask for support that they do not know is available. This is
particularly true for students who have not had support in school or whose impairment
only developed or became apparent towards the end of their time at school.
They kind of, so you actually have to know what you want to ask for,
so if you’re not sure, because I suppose I don’t really know what I can
get and what I can’t get, so I don’t really use the disability office that
much.
(student with dyslexia)
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I think because I’ve never had support previously, I didn’t really know
what was open to me so I just kind of went along without it, if that
makes sense, I didn’t really seek out what was available to me.
(student with dyslexia, diagnosed during the last term of her A Levels)
As a result some of the students in our study are not getting the full range of support
to which they are entitled. Some students have also cited lack of confidence as a
reason they have not pushed for support. Though these students are aware that they
may be entitled to more support, they feel they would be ‘causing trouble’ by pushing
for more support from tutors or their disability office. Lack of confidence or fear may
stop students from disclosing impairments altogether, as evidenced by one of our
students who has both dyslexia and depression. She has disclosed the dyslexia but will
not disclose the depression to the university.
It sounds bad to have two disabilities rather than just one … I’d
probably say I had a disability as my dyslexia rather than my
depression because if you say dyslexia, one, people don’t know what it
is and don’t understand the ins and outs of it and secondly it doesn’t
have a big stigma like depression.
(student with disclosed dyslexia and undisclosed depression)
The support this student has received for dyslexia has been helpful in managing her
depression, for example, provision of a home PC, lecture notes being made available
and extra time and a separate room for exams. However, had she not had dyslexia she
would not have approached the disability office and would be unsupported. It would
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be naïve to assume that this student is alone in her reluctance to disclose mental health
problems. But, it is outside the scope of this study to include students who have not
disclosed impairments. Our findings point to the need for further research in this area.
However, even when support was available, this often created a ‘difference’ between
the students with the impairment and their peers. This difference was not necessarily a
negative one, but nonetheless was apparent.
Me and my mates, we banter, a lot of banter, when the old laptop came
through, they gave me big shit about it (laughs) but it was all friendly.
No, not in a negative way at all.
(student with dyslexia)
People are starting to point fingers and sort of go, oh Christ look at
him, he’s getting extra money because he’s disabled. It does make you
feel a bit of a separate person to everyone else.
(Student with epilepsy)
Discussion
Although this paper does not utilise the findings from the whole of the research
project, and indeed only focuses upon results obtained from students with hidden
impairments at two out of the four universities that are involved within the research, it
does provide a cursory insight into the experiences of students with hidden
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impairments in H.E. It also reinforces the need of the wider research project to further
investigate disabled identities within the H.E. context.
Our preliminary findings highlight the contradictory nature that comes with having a
hidden impairment. On the one hand, students are somewhat in control of their
disability identity and can choose whether to disclose their impairment. On the other
hand, the disclosure of an impairment can potentially encourage the prevailing
discourses that position disability as being inadequate and ‘different’. Consequently,
students are confronted with the dilemma of keeping their impairment undisclosed
and forgoing institutional support or potentially being subjected to stigma and
labelling if they wish to access such support..
The findings, therefore, encourage disability advisors and tutors to be proactive
throughout the year in promoting the support available to disabled students. Although
there is not the scope to develop other areas of the research in this paper, lecturer
interviews have revealed a reluctance to promote disability support due to concerns
that non-disabled students might try to claim they have a disability to access
additional perks. It is important to remember that a student cannot claim disability
support without proof of an impairment from either a medical professional and/or
educational psychologist. Promoting disability support is in disabled students’ best
interests and will not confer unwarranted advantage, or indeed disadvantage, to nondisabled students.
Our research supports the work of Olney and Brockelman (2003) in many ways. They
maintain that disability identity is not transient; one is disabled according to the
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situation, not as a constant state of being. This is supported by our students, many of
whom comment that they only describe themselves as disabled in relation to their
teaching and learning support needs. Where there is no need of support there is no
need for a disability identity. This also supports the precepts of the social model of
disability. If it is understood that people are disabled by barriers to participation,
where there are no barriers, there is no disablement.
Through fulfilling the
requirements of the Disability Discrimination Act (1995) to make anticipatory
adjustments, Higher Education institutions are working towards removing these
disabling barriers. However, if university staff, university peers, and even the disabled
student does not understand their impairment, or the support offered, then the
implications of this on the students’ help-seeking behaviour, and subsequently the
student experience, can be both disempowering and non-inclusive.
Footnote
ESRC award RES-139-25-0135: ‘Enhancing the Quality and Outcomes of Disabled
Students’ Learning in Higher Education’. Project Director: Professor Mary Fuller,
University of Gloucestershire
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