Children’s Experiences Of Disability – Pointers To A Social

children’s experiences of disability – pointers to a social model of childhood disability word count for article and abstract – 7000 words

Children’s experiences of disability – pointers to a social model of
childhood disability
Word count for article and abstract – 7000 words
Introduction
Disabled children have received little attention within the social
model of disability: the extent to which it provides an adequate
explanatory framework for their experiences has been little explored.
Many studies about disabled children make reference to the social
model, often in relation to identifying social or material barriers or
in formulating recommendations for better services (Morris 1998a,
Dowling and Dolan 2001, Murray 2002, Townsley et al 2004, Rabiee et al
2005). Few have focused specifically on children’s perceptions and
experiences of impairment and disability, or explored the implications
of these for theorizing childhood disability. Watson et al (2000), and
Kelly (2005) following Connors and Stalker (2003a), are notable
exceptions. Ali et al (2001), in a critical review of the literature
relating to Black disabled children, conclude that the disability
movement in Britain has neglected children’s experiences.
The research reported in this paper was a two-year study conducted in
the Social Work Research Centre at the University of Stirling, funded
by the Scottish Executive. A full account can be found in Connors and
Stalker (2003b). The paper begins by outlining the study’s theoretical
framework, which drew on insights from disability studies and the
sociology of childhood. The study’s aims and methods are outlined and
some key findings presented. We conclude by speculating why most of
the children focused on ‘sameness’ rather than difference in their
accounts and the implications of the findings for developing a social
model of childhood disability.
Theoretical Framework
The Sociology of Childhood
Until the early 1990s, research on childhood was largely concerned
with children's psychological, physical and social development.
Children were usually prescribed a passive role in this process and
seen through adult eyes (Waksler 1991, Shakespeare and Watson 1998):
they were adults in training. The idea that childhood, unlike
biological immaturity, might be a social construction influenced by
factors such as class, gender and ethnicity emerged through the
'sociology of childhood'. Here, children are recognised as having a
unique perspective and actively shaping their own lives (James 1993,
James and Prout 1997, Mayall 2002). Listening to children's accounts
of their experiences has encouraged recognition that their lives are
not homogenous and need to be studied in all their diversity (Brannen
and O' Brien 1995). In order to understand general themes in
children's lives, it is necessary to pay attention to their narratives
and personal experiences. Shakespeare and Watson (1998) pointed to the
potential for drawing on insights from both the social model of
disability and the sociology of childhood to explore disabled
children’s experiences.
Reliance on personal experience, which constitutes much of research
with children, has been a contested area within disability studies.
Finkelstein (1996) questioned its relevance, believing that attempts
on the part of disabled people to describe the detail of their lives
is a route back to viewing disability as a tragic event which
‘happens’ to some individuals. Several disabled feminists (Morris
1993, Crow 1996, Thomas 1999) have suggested that not to do so is to
ignore lessons from the feminist movement:
In opposition to Finkelstein’s view that a focus on individual lives
and experiences fails to enable us to understand (and thus to
challenge) the socio-structural, I would agree with those who see life
history accounts…….as evidence that ‘the micro’ is constitutive of
‘the macro’. Experiential narratives offer a route to understanding
the ‘socio-structural’. (Thomas 1999, p78)
The social relational model of disability
Thomas’ work (1999) was particularly important to our study because
she has developed definitions of disability which relate directly to
people’s lived experience. She views disability as being rooted in an
unequal social relationship. It follows a similar course to racism and
sexism and results in 'the social imposition of restrictions of
activity on impaired people' by non-impaired people, either through ‘barriers
to doing’ or ‘barriers to being'. The former refers to physical,
economic and material barriers, such as inaccessible buildings or
transport, which restrict or prevent people from undertaking certain
activities; the latter refers to hurtful, hostile or inappropriate
behaviour which has a negative effect on an individual’s sense of
self, affecting what they feel they can be or become. Thomas calls
this process ‘psycho-emotional disablism’. Barriers to being are not
confined to the personal, one to one level: exclusionary institutional
policies and practices can have the same effect.
Thomas also identifies impairment effects, that is, restrictions of
activity which result from living with an impairment. This could
include the fatigue or discomfort associated with some conditions, or
the inability to do certain things. Historically, disability studies
has avoided acknowledging the limitations which can be associated with
impairment, (Crow 1996). Shakespeare and Watson (2002) see this as a
great weakness in social model theory, arguing that impairment is
'experientially .... salient to many'. Thomas (2001) suggests that
acknowledging personal experiences of living with impairment and
disability is politically unifying because it enables a full range of
disability experiences to be recognised and this inclusivity will
better represent all disabled people in society (Reeve 2002).
Difference
The idea of difference is another debate within disability studies
relevant to our research. One view is that difference does not exist
but rather individuals' bodies are constructed and then maintained as
disabled by social opinions and barriers (Price and Shildrick 1998).
An alternative view is that disabled people are 'essentially'
different from non-disabled people (Thomas 1999) so that difference is
part of the 'essence' of a disabled person. For Morris (1991), having
an impairment makes a person fundamentally different from someone who
does not have one. This difference exists beyond the socially
constructed effects of disablism, making the presence of impairment
the key difference between disabled and non-disabled people.
Scott-Hill (2004) suggests that difference has been neglected because
its acknowledgement poses a threat to the disabled people’s movement
and its political message: she calls for more ‘dialogue across
difference’.
The fusion of ideas from disability studies and the sociology of
childhood is at an early stage and while there are reasons to be
cautious, there are indications that it could be a very fruitful
relationship (Watson et al 2000) as we seek a framework within which
to understand and describe the richness and diversity of disabled
children's everyday lives.
Study aims and methods
The aims of the study were
*
To explore disabled children’s understandings of disability
*
To examine the ways in which they negotiate the experience of
disability in their daily lives
*
To examine the children’s perceptions of their relationships with
professionals and their views of service provision
*
To examine siblings’ perceptions of the effects on them of having
a disabled brother or sister,
In this paper, we focus on the first of these aims.
At the beginning of the study – when the research proposal was being
written – we recruited two ‘research advisors’, aged 11 and 12,
through a voluntary organization for disabled people. The children
gave us valuable advice about the design of information and consent
leaflets for different age groups, the wording of questions and the
suitability of interview materials.
Families were recruited to the study through schools and voluntary
organizations, which were asked to pass on letters to parents, and
information leaflets and ‘agreement forms’ to children. We were not
aiming to recruit a representative sample but rather to include
children and young people from a range of age groups, with a variety
of impairments, attending different types of school, and so on. Twenty
five families, who had 26 disabled children in total, agreed to take
part.
Before formal data collection commenced, an initial visit was made to
each family to discuss the implications of participating in the
research. This provided an opportunity for researcher and family
members to begin to get to know one another, agree ground rules,
ensure that everyone understood what the study entailed and had an
opportunity to ask questions or raise concerns. This meeting enabled
the researchers to identify each child’s accustomed communication
method and to some extent assess their cognitive ability, thus
enabling us to use an appropriate approach in the interviews.
One-to-one guided conversations were conducted with the young disabled
people in their own homes, spread over two or three visits. With
younger children, a semi structured interview schedule was used,
supplemented by a range of activities and communications aids, such as
‘spidergrams’, word choice exercises and picture cards, to engage the
child’s interests and facilitate communication. This approach was also
used with all the youngsters who had learning disabilities: piloting
showed that the more structured format of this questionnaire was more
accessible to this group than the topic guide (covering the same
subjects) designed for older children.
We asked the children to tell us about ‘a typical day’ at school and
at the weekend, relationships with family and friends, their local
neighbourhood, experiences at school, pastimes and interests, use of
services and future aspirations. While open-ended questions were
enough to launch some children on a blow-by-blow account of, for
example, everything they had done the previous day, other youngsters,
notably those with learning disabilities, needed the question broken
up into more manageable chunks, such as ‘what time do you usually get
up? What do you like for breakfast?’ We did not include direct
questions about impairment in the children’s interview schedules: nor
did we think it appropriate to ask the children, in so many words, how
they ‘understood disability’. Rather, we preferred to wait and see
what they had to say on these topics while telling us about their
daily lives generally and in response to specific questions like
*
‘Are there some things you are quite good at?’
*
‘Are there any things you find difficult to do?’
*
‘What’s the best thing about school?’
*
‘What’s the worst thing?’ ‘
*
Have you ever been bullied at school?’
*
‘Are there any things you need help to do?’ and
*
‘If you had a magic wand and you could wish for something to
happen, what would you wish?’
If individual children made little or no reference to impairment as
the interview proceeded, we raised the subject in follow-up questions,
eg: after the ‘magic wand’ question, we might ask ‘What about your
disability? Would you change anything about that?’ This was easier
with those who had physical or sensory impairments than those with
learning disabilities (see Stalker and Connors (2005) for an account
of these children’s views and experiences).
Over the last decade, an increasing number of publications have
offered guidance on seeking the views of disabled children for
consultation or research (eg: Ward 1997, Morris 1998b, Potter and
Whittaker 2001, Stone, 2001, Morris 2003). In our experience, talking
to disabled children is often no different from talking to any child:
it is important to see every child as a child first and with an
impairment, second. However, one of the authors (Connors), who
conducted most of the fieldwork, is fluent in British Sign Language
and Makaton: the ability to draw on these methods was essential to
avoid excluding four children from the study. A fifth child used
facilitated communication: his mother went through some of the
questions with him and passed on the responses to us. Two children had
profound multiple impairment and here we interviewed their parents,
although being careful not to treat their views as ‘proxy’ data.
Ethical issues are heightened in research with children. Consent was
treated as an on-going process: thus, we asked the children at the
start of each session if they felt okay about talking to us again,
checked that we could tape record what they said, reminded them they
could stop at any time or ‘pass’ on any question they did not wish to
answer and that nothing they said would be reported to their parents,
unless it indicated the children were at risk of harm. One child
decided not to proceed with a second interview – which (despite losing
potentially valuable data!) reassured us that he did not feel under
pressure to participate.
The children, 15 boys and 11 girls, were aged between 7 and 15. There
was one Black child, reflecting the relatively low population of Black
and minority ethnic families in Scotland, and all had English as their
first language. We deliberately avoided using medical diagnoses to
recruit children and did not ‘measure’ severity of impairment but
simply recorded any conditions or diagnoses which parents or schools
tgave us. Broadly, 13 children were described as having learning
disabilities, five, sensory impairments and six, physical impairments.
As noted above, two had profound/ multiple impairment. The youngsters
attended a variety of schools – ‘special’ (segregated), mainstream
(inclusive) and ‘integrated’ (segregated units within mainstream
schools). All lived in central or southern Scotland.
Twenty-four siblings and 38 parents also took part in one interview
each. Semi structured schedules were used to explore their views and
experiences – but these are not reported in detail here (see Stalker
and Connors (2004) re. siblings’ views about impairment, disablism and
difference).
Data recorded on audio or video tape (interviews conducted in British
Sign Language) were transcribed in full. The transcripts were read
through carefully several times, a sample being read and discussed by
both authors. Emerging patterns, common themes and key points were
identified and these, together with additional material taken from
field notes and pen profiles of the families, were used to distil the
findings.
Full details of the methodology can be found in Stalker and Connors
(2003).
Findings
The findings suggest that children experienced disability in four
ways, in terms of impairment, difference, other people's reactions and
material barriers.
Impairment
Much of what children talked about as ‘disability' was impairment and
the effects of impairment on their day to day living. (None used the
word 'impairment'). Children's main source of information about the
cause of their impairments was their parents. Parents told us they
tended to use one of three explanations: the child was 'special',
impairment was part of God's plan for the family, or there had been an
accident or illness around the time of birth. Several parents
commented on their dread at being asked for explanations and it was
notable that disabled children seemed to ask once and then let the
subject drop; perhaps they were aware of the distress felt by parents.
Generally, there seemed not to be much discussion within families
about impairment. A number of children had never talked to their
parents about it and, in some families, there was avoidance and/or
silence about the subject. One sibling, a 13 year old boy, reported
that his mother had forbidden him to tell other people about his
sister’s impairment but rather to ‘keep it in between the family’.
The disabled children tended to see impairment in medical terms - not
surprisingly, given that most had a high level of contact with health
services. Most had experienced multiple hospital admissions,
operations and regular outpatient appointments - all of which might
lead them to conclude that having an impairment linked them directly
to healthcare professionals. A few had cheerful memories of being in
hospital; for example, one said she would give her doctor ‘20 out of
10’ points for helping her while another said his consultant was
’brilliant’. A 10 year old boy with learning disabilities recalled an
eye operation he had undergone aged 5 or 6:
Researcher: What happened? Did you go into hospital on your own?
Child: My mum wasn’t allowed to come in with me.
Researcher: Was she not?
Child: Into the theatre
Researcher: Into the theatre. Was she allowed to be with you in the
ward?
Child: Yes. Uh-huh
Researcher: Good
Child: What made me scared most was, there were these tongs, they were
like that…with big bridges with lights on them, you know, and 'oh, oh,
what are they for? What are they for?’
Researcher: Hmm. Hmm.
Child: And there were things all in my mouth.
Researcher: Hmm Hmm
Child: Then everybody was there
Researcher: Ah ha
Child: Then I went ‘Mum!’
Researcher: Hmm. So it’s quite scary. Did it help?
Child: Yeah.
However, none of the children appeared to view impairment as a
'tragedy', despite the close ties between the ‘medical' and 'tragedy'
models of disability (Hevey 1993). They made no reference to feeling
loss or having a sense of being hard done by.
Indeed, for some children it seemed that having an impairment was not
a ‘big deal’ in their lives. When offered a ‘magic wand’ and asked if
they would like to change anything about themselves or their lives,
only three referred to their impairment - two said they would like to
be able to walk and one wanted better vision. One girl with mobility
difficulties compared herself favourably to other children:
When I see people as they two are, I think ‘gosh’ and I'm like glad I
can walk and people see me and I walk like this.
When a boy, aged 9, was asked if he ever wished he didn't have to use
a wheelchair, the reply was:
That's it, I'm in a wheelchair so just get on with it...just get on
with what you're doing.
The children did tell us about what Thomas (1999) calls 'impairment
effects' (restrictions of activity which result from living with
impairment, as opposed to restrictions caused by social or material
barriers). They talked about repeated chest infections, tiring easily,
being in pain, having difficulty completing school work. At the same
time, most seemed to have learned to manage - or at least put up with
- these things. Most children appeared to have a practical, pragmatic
attitude to their impairment. The majority appeared happy with
themselves and were not looking for a 'cure'. However, there were some
indications that a few of the younger children thought they would
outgrow their impairment. The mother of a 9 year old Deaf boy said he
thought he would grow into a hearing adult. (This child had no contact
with Deaf adults). Only one younger child thought she would need
support when she grew up, in contrast to most of the older ones, who
recognised they would need support in some form or other.
Difference
Parents usually thought their children were aware of themselves as
different from other children, but most of the children did not
mention it. Instead, the majority focused on the ways their lives were
similar to or the same as those of their peers. Most said they felt
happy ‘most of the time’, had a sense of achievement through school or
sports and saw themselves as good friends and helpful classmates. They
were active beings with opportunities to mould at least some aspects
of their lives. Most felt they had enough say in their lives -
although some teenagers, like many youngsters of that age, were
struggling with their parents about being allowed more independence.
One girl said of her mother:
She’s got to understand that she can’t rule my life any more...I just
want to make up my own mind now because she’s always deciding for me,
like what’s best for me and sometimes I get angry. She just doesn’t
realize that I’m grown up now but soon I’m going to be 14 and I won’t
be a wee girl any more.
When asked what they would be doing at their parents’ age, the
children revealed very similar aspirations to those of other
youngsters, for example, becoming a builder, soldier, fireman, vet,
nurse or ‘singer and dancer’.
Most problems the children identified were in the here and now: it was
striking that on this subject their responses differed from their
parents’ accounts. Most parents were able to tell us about occasions
where their child had been discriminated against, treated badly or
faced some difficulty - but the children themselves painted a
different picture of the issues which concerned them. Some,
particularly in the older group, reported a high level of boredom;
many of these young people attended special schools and so had few, if
any, friends in their local communities. One teenager explained:
It’s like weird because people at my [segregated] school, they are not
as much my friends as people here ‘cos I don’t know them that much. My
friends past the years, they come to my house but not them. They’ve
never even seen my house.
As Cavet (1998) points out, at this age, leisure and friendship
‘happen’ either in young people's homes or venues like sporting
facilities or shopping centres, neither of which may be accessible to
some disabled adolescents and teenagers.
Fifteen children in the sample had some degree of learning
disabilities. These youngsters made very few references to their
impairment, with only one mentioning her diagnosis. This 13 year old
girl had written a story about herself for the researcher, with whom
she had this exchange as they read it together:
Researcher: What’s that? My name is …
Child: Pat Brownlie, I have De Soto syndrome.
Researcher: Right. Tell me what De Soto syndrome is.
Child: Em…eh…. What is it again?
Researcher: How does it make you feel?...
Child: Different.
It was interesting that, unlike Pat, most of the children focused on
'sameness’: in many cases, it would be hard to avoid or minimise their
difference. Our evidence suggests that it was the way difference was
responded to and managed which was crucial.
Some schools with 'inclusive' policies seemed to take the view that
difference should not even be acknowledged. We were not allowed to
make contact with families through some schools because our research
was about disabled children and they were not to be singled out
(despite the fact that all the interviews were to take place in the
family home). One danger of treating all children 'the same’ is that
rules and procedures designed for the majority do not always fit the
minority. In an example from a mainstream school, one mother told us
that her 14 year old son, a wheelchair user, had been left alone in
the school during fire drill:
He was telling me the other day how they did the fire alarm and
everybody was screaming out in the playground. Richard was still in
the school and everybody was outside. He was saying 'Mum, I was
really, really worried about what happens if there's a real fire.' No
one came to his assistance at all.
Where difference was badly managed, children could feel hurt and
excluded, resulting in the ‘barriers to being’ that Thomas (1999)
identifies. One boy, who attended an integrated unit within a
mainstream school, asked his mother what he had done 'wrong' to be
placed in a 'special' class. Lack of information and explanation had
led him to equate difference with badness or naughtiness.
Some special schools seemed to focus on difference in an unhelpful
way, defining the children in terms of their impairment. At one
school, teachers apparently referred to pupils as 'wheelchairs' and 'walkers'.
A wheelchair user at this school commented: 'It's sad because we're
just the same. We just can't walk, that's all the difference.' Another
pupil at this school told us: 'I'm happy being a cerebral palsy.'
Despite her stated ‘happiness’, it seems unlikely that being publicly
labeled in this way - and then apparently internalising the definition
- would help children develop a rounded sense of self. At the same
time, a couple of children believed that needs relating to their
impairment were better met in special school than they would be in
mainstream, with one boy commenting: A Deaf girl preferred to be :
Where there’s signing, where everyone signs, all the teachers, all the
children.
Researcher: Why is that better than going to a school with hearing
children?
Child: Hearing children – no one signs. I don’t understand them and
they don’t understand me.
Echoing findings made elsewhere (Davis and Watson 2001, Skar and Tam
2001), there were several reports of children in mainstream schools
feeling unhappy with their special needs assistants (SNAs), whose role
is to facilitate inclusion. One older girl was very annoyed that at
break times her SNA regularly took her to the younger children’s
playground when, understandably, she wanted to mix with young people
of her own age. In another case, a SNA always took a pupil into the
nursery class at lunch times, because she (the SNA) was friendly with
the nursery staff!
On the other hand, some schools responded to difference in a positive
way. Many children had
extra aids and equipment at school or were taken out of their classes
for one-to-one
tuition. Much of this support seemed to be well embedded in
daily routines and not made into an issue. The mother of a boy
attending mainstream school recounted:
There was that time, remember, when.... they'd asked a question in the
big hall ... It was 'does anybody in here think they are special?' and
he put his hand up and said 'I am because I have cerebral palsy' and
... he went out to the front and spoke about his disability to
everybody.
It could be argued that encouraging children to see themselves as
‘special’ because they have an impairment is not a positive way
forward. As indicated earlier in this paper in relation to different
types of school, the word ‘special’ can be a euphemism (or
justification) for segregated facilities. ‘Special’ might also be seen
as a somewhat mawkish or sentimental way of portraying disabled
children. However some parents used this word to emphasise that that
their children were unique and valued individuals. Most worked hard to
give the children the message that they were just as good as their
brothers and sisters and any other children, that it was possible to
be different but equal.
Reactions of other people
Nevertheless, children could be made to feel different and of lesser
value by the unhelpful and sometimes hostile words and actions of
others, whether people they knew or complete strangers. These are
another example of what Thomas (1999) refers to as ‘barriers to
being', relating to the psycho-emotional dimension of disability. We
were told of incidents where people unknown to the child had acted
insensitively, for example
• Staring
• Talking down, as if addressing a young child
• Inappropriate comments
• Inappropriate behaviour
• Overt sympathy.
Children who used wheelchairs seemed to be a particular target for the
public at large. An older boy, who had difficulty eating, disliked
going out to restaurants because he was stared at. He used a
wheelchair and got annoyed when people bent down to talk to him as if
he was 'small' or 'stupid':
I don’t mind if it’s wee boys or wee girls that look at me but if it’s
adults…they should know. It’s as if they’ve never seen a wheelchair
before and they have, eh?
A 13 year old girl with learning disabilities described the harassment
which she and her single mother had experienced from neighbours,
including:
The man next door came to our door and rattled the letter box and
shouted ‘come out you cows or I will get you’. So we called the police
and then they did not believe us because I was a special needs.
Other children could also be cruel: almost half the disabled children
had experienced bullying, either at school or in their local
neighbourhood. One boy reported that he was ‘made fun of’ at school
‘about nearly every day.’ His mother reported he had once had a good
day in school because no-one had called him ‘blindie’. Although the
children were very hurt by this kind of behaviour, a few took active
steps to deal with it, reporting the bullying to parents or teachers.
One girl faced up to the bullies herself and was not bothered by them
again. A few were not above giving as good as they got, as this boy’s
response shows:
No, I just bully them back. Or if they started kicking us, I’d kick
them back.
Material barriers
Thomas (1999) describes 'barriers to doing' as restrictions of
activity arising from social or physical factors. These caused
significant difficulties in the children's lives. They included
• Lack of access to leisure facilities and clubs, especially for
teenagers
• Transport difficulties
• Paucity of after-school activities
• Lack of support with communication.
One boy reported he had been unable to go to a mainstream high school
with friends from primary school because parts of the building were
not accessible to him. A 13 year old boy who wanted to go shopping
with his friends at the weekend found that his local Shopmobility
scheme had no children’s wheelchairs. A 14 year old who wanted to
attend an evening youth club at school was told it was not possible to
arrange accessible transport at that time. It was suggested he remain
in school after afternoon lessons ended until the club began.
Understandably, he was not willing to wait around in school by himself
for four hours – nor to attend the youth club wearing his school
uniform.
There was less evidence of material barriers in the accounts given by
children with learning disabilities. Some complained of boredom at
weekends and school holidays, sometimes linked to the fact that they
attended a school outside their neighbourhood and lacked friends
locally. Alternatively they may have been less affected by – or aware
of – the physical barriers affecting some of the children with
physical and sensory impairments.
Discussion
So, children experienced disability in terms of impairment,
difference, other people’s behaviour and material barriers. Some had
negative experiences of the way difference was handled at school; many
encountered hurtful or hostile reactions from other people, and many
also came up against physical barriers which restricted their day to
day lives. Despite all this, most of the children presented themselves
as much the same as others - young people with fairly ordinary lives.
They focused on sameness. Why?
There could be a number of explanations. First, it may be that some of
the children felt they had to minimise or deny their difference. Youth
culture and consumerism exert heavy pressure on young people to follow
the crowd, keep up with others, not to stand out. Disabled youngsters
are by no means immune to such pressure albeit, as Hughes et al (2005)
argue, they may find themselves excluded from ‘going with the flow’.
The concept and practice of ‘passing’ as 'normal' was first identified
by Edgerton (1967) in his longitudinal study of people with learning
disabilities in the US. More recently, Watson et al (2000) reported
that some children with invisible impairments exclude themselves from
the 'disability' category. A significant number of children in our
study were not encouraged to talk about impairment and disability at
home or at school. These attitudes - or pressures - would tend to
discourage children from talking about difference. It is notable that
children at special schools tended to talk more openly about their
impairments - although the schools themselves still seemed to be
operating out of a medical model of disability.
Secondly – and taking a different tack - we could argue that children
in this study are self-directing agents, choosing to manage their day
to day lives and experience of disability in a matter of fact way. It
is important to stress here that the children's (mostly positive)
accounts of their lives differ significantly from earlier research
findings about disabled children based on parents' or professionals'
views which tend to be considerably more negative (see Baldwin and
Carlisle 1994). Some of the older children were also active in
responding to the hostile responses of other people, although there
was less they could do about the structural barriers they came up
against. They were also developing frameworks within which to
understand the behaviors shown to them and, as active agents, chose
not to be categorized by these responses. Impairment, and the
resulting disability, was not seen as a defining feature of their
identities. This concurs with the findings of Priestley et al (1999)
who note that although children could identify the disabling barriers
they encountered, they were still keen to be seen as ‘normal’, if
different, and resisted being defined as disabled. However, there were
exceptions, like the girl who described herself a ‘a cerebral palsy’.
However, we lean towards a third explanation. Perhaps the children
were neither ‘in denial’ nor fully in command of resisting the various
barriers they face. It may be that they did not have a language with
which to discuss difference. We have already noted that they lacked
contact with disabled adults; they did not have positive role models
of disabled people, nor opportunities to share stories about their
lives with other disabled children. Without this framework, it could
be that children strove to be – or appear - the same as their
non-disabled peers. If so, then there is a need for disabled children
to have contact with organisations of disabled people and access to
information and ideas about social models of disability. A
counter-narrative is a critique of dominant public narratives
constructed by people excluded from mainstream society to tell their
own story (Thomas 1999). The social model of disability is a counter
narrative (which has had considerable impact) - but up to now
children’s narratives have played little part in its construction.
Thus, there is a need for the social model to take children’s
experiences on board. How can it do this?
Our findings show that Thomas’ social relational model of disability,
which was developed from women’s accounts of disability, can also
inform our understandings of disabled children’s experiences. First,
despite the fact that the majority had relatively little information
about the cause and in some cases, nature of their impairments,
impairment was a significant part of their daily experience. They
reported various ‘impairment effects’. In addition, our analysis
showed some significant differences in the experiences and perceptions
of those with learning disabilities compared to those with physical
and sensory impairment. Secondly, there was evidence of ‘barriers to
doing’ in the children’s accounts, particularly those with physical or
sensory impairments. They identified various material, structural and
institutional barriers which restricted their activities.
Thirdly, the young people told us about their experiences of being
excluded or made to feel inferior by the comments and behaviour of
others, sometimes thoughtless, sometimes deliberately hurtful. Some
parents strove to give their disabled children positive messages about
their value and worth and fought for them to have an ordinary life,
for example, to attend mainstream schools or be included in local
activities, and some children received good support from teachers or
other professionals. Nevertheless, they could be brought up against
their difference, so to speak, in a negative way by other people’s
reactions, at both a personal and institutional level. In the
children’s accounts, it was these incidents which upset them most,
albeit some showed active resistance to, or rejection of, the labels
or restrictions others sought to impose on them. Thus, in thinking
about disabled childhoods, ‘impairment effects’, ‘barriers to doing’
and ‘barriers to being’ all seem to have a place. Our findings suggest
that the last of these may have particular significance during
childhood years, when young people are going through important stages
of identity formation which may lay the foundations of self confidence
and self worth for years to come.
It is early days and these ideas are no more than a potential starting
point. There is need for a two-way process, in which disabled children
have access to ideas and information about social models of
disability, and social models of disability take account of their
experiences and understandings. To facilitate this process, we need to
open up more space for conversations between disabled
children, disability activists and researchers, and their allies.
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